Trevor arraigned some surprises for our anniversary. He likes to give me surprises. Being it the last one was an airplane ride, I am really excited for this one. Tonight we are going out with Trevor's Dad, for an Anniversary dinner. Trevor has a whole bunch of surprises for Sunday. Yesterday I broke a glass plate. I have been tripping, falling, and spilling. My brain fog is bad again too. I have been getting sicker the past three days. Accept and live full of hope. Always see the light at the end of the tunnel. The light is what pulls us through all of the dark times. Follow the light. Let it carry you safely, against the dark. Fight for the light. Let the light carry you away. It will take you where there is no pain. The pain will get attacked by the light.
Friday, July 31, 2009
Thursday, July 30, 2009
Hope
Hope is all we have. It is all we fight for. It is what we live for. Hope is what we need to survive. Hope builds us. Dispare, tears us down. Try to hang you head down. The down side leads no nowhere but down. We need to fight to get us op. Motivate. You may struggle, but stay a float Never see the black. Only the white. Let in the sun. Go outside. Enjoy life. It is the only life we have. Got to live it, like we are dying. Live with me. Fight with me. Stay happy. Fight for your life. It is on the line. Everyday and every second, is a struggle. We can fight together.
Posted by Heather Dugdale at 8:27 PM 0 comments
Wednesday, July 29, 2009
Take Action! Click on the link below to advocate for our community.
Take Action! Click on the link below to advocate for our community.
This link is HDSA's adovocay link. It shows ways to help Americans with HD help out for the greater good. They even have a mailing list. You can get action alerts to tell you of advocacy news.
http://capwiz.com/hdsa/home
http://capwiz.com/hdsa/home
Posted by Heather Dugdale at 7:49 PM 0 comments
Anniversary Weekend
We rented a log cabin for two days, down by the lake. All we need is food. It is beautiful. We are taking Lucky with us. He will have fun. We will got to the beach. On the Ferry, for hikes. I am so excited. We can't believe it has been three years. We are going to hike to see a waterfall. I get to feed my ducks. It is one of my favourite things to do when we take the Ferry and go to Nelson. You can feed ducks and geese. They go crazy and fight to get food. I don't know where I would be without my Trevor. I love him so much. I can't wait to go. We are so excited. I had had good sleeping the past three days, no kicking. Accpet it Live it. Fight HD. Don't let it claim you. You are you, not HD. We are ourselves. We always will be.
Posted by Heather Dugdale at 7:36 PM 0 comments
Tuesday, July 28, 2009
Meds not working
I have been feeling like my meds need to be upped again. I am feeling angry, irrational, moody, depressed and anxious. Losing the drive to do things that I enjoy. Every time I go to Calgary, to see my HD team, my meds are good. When I come back, within a month we need to up them. I am lucky. I think they have not needed them adjusted for 8 months know. There is more I can take. It just means my face will twitch more. I would rather be medicated than to care about that. Today, I had a bad HD day. At night I get worse. In the day I am healthy. Some nights, Trevor has to dress me and put on my PJ's. I got a job. I work with Trevor. I clean bathrooms. Everyday I get two dollars. He wants me to have money in my bank account. Fight to be happy. Everyday is a struggle. One that we don't want. We did not choose this. It choose us. We must make the best of it. We have the strength. I have the strength. You don't know how strong you are, until you have been tested. Be strong. Fight with me. Never lose sight of the hope. Things will get better. They always do.
Posted by Heather Dugdale at 8:24 PM 0 comments
Monday, July 27, 2009
Third Anniversary
We had a fun weekend. We had fun at the beach. We found a camping spot on the Lake for our third anniversary. I can't believe it has been three years now. Trevor only saw me healthy for six months until my HD kicked in. He married me anyway. He is the perfect man. He even wants to become a Nurse to look after me. I would not know what to do without him. I love him so much. I always wanted to be married young. I wanted as much healthy time with my husband. Though it was six months, we are still living life everyday. Just living everyday, loving each other. I never thought I could find a man, who could handle my HD. Then Trevor came. I am noticing a painfully HD symptom. I get pain in my legs and need to kick at night. I would be up all night in pain and kicking. I keep Trevor up too. I noticed it when I went to Radium to stay with Alice. Every night was the same. Just have to accept the fact that we all get sicker. We have HD. This is going to happen. This is the real HD. We are constantly trying to fight and live well. It is a big fight, just to try and stay balanced. Balanced is what we need. Let it go with me, of it all. Let go of HD's hold on us. You will not take our lives away. Choose to fight. Don't choose to flight. We are fighting until the very end.
Posted by Heather Dugdale at 7:29 PM 0 comments
Creatine and CoQ10 have additive effects in the R6/2 mice
Creatine and CoQ10 have additive effects in the R6/2 mice
I am so excited to do Phase Two with Gary. I am loving the Creatne I am taking. I have gained lots of muscle back. I now weigh 125. When HD, first kicked in I weighed 100. I can't wait for October 2009.
Coalition for the Cure researcher, Dr. M. Flint Beal and colleagues have found that creatine and CoQ10 each exert neuroprotective effects in a mouse model of HD and that neuroprotection increases when both are administered.Both supplements boost energy metabolism which is known to be impaired in HD patients. In addition, both are antioxidants and oxidative damage is known to be a problem in HD. Creatine and CoQ10 are each in Phase III (final) clinical trials conducted by the Huntington Study Group as a result of promising results in mouse models and Phase I and II trials.
Should both be found effective, doctors and patients will need to know whether they should be taken in combination or whether there is no additional benefit to taking more than one of the supplements.
Creatine and CoQ10 affect cellular energy through different mechanisms. Creatine plays a key role in energy buffering between the mitochondria and the cytosol of the cell which is especially important in cells with a high demand for energy. CoQ10 is a cofactor in the electron transport chain which is part of the process by which energy is produced in the mitochondria. CoQ10 accepts electrons from Complex I and II and transfers them to Complex III.
Dr. Beal and colleagues provided the R6/2 mice with a diet which included two percent creatine or one percent CoQ10 or both and compared the results for the three groups with R6/2 mice which were fed a regular diet. The CoQ10 group did better on the rotorod test of motor performance and survived longer than the control group. The creatine group did better than the CoQ10 group while the group which received both did best of all.
The results suggest that research into whether HD patients wo
uld benefit from taking both is worth pursuing. "If both CoQ10 and creatine show efficacy in ... HD trials, then future studies of the two compounds in combination may be warranted. A combination of the two compounds would also be a promising approach for treating pre-symptomatic individuals, since both compounds are natural products and are well-tolerated with few side effects," the authors conclude.
Dr Beal
Posted by Heather Dugdale at 1:53 PM 0 comments
Saturday, July 25, 2009
A Breakthrough in generating stem cells from adult cells
A Breakthrough in generating stem cells from adult cells
Countdown For the Cure
A group of researchers led by Scripps Institute scientist Dr. Sheng Ding have developed a safer way to generate stem cells for therapeutics.
Several years ago, Japanese researchers were able to ‘turn back the clock' and transform adult skin cells from mice into stem cells by the addition of four genes. Later researchers were able to do the same for human cells. However, while the stem cell lines could be used for research, they were not suitable for use in therapy since the added genes remain in the cell and are associated with the growth of cancerous tumors.
The Scripps Research Institute team was able to chemically reprogram the cells. They used recombinant proteins which are combinations of DNA fragments from various organisms. They experimented to find the exact combinations needed to turn adult skin cells from mice into embryonic stem cells. They were then able to guide their development into neurons, pancreatic and cardiac cells. This new type of stem cell is called a "protein-induced pluripotent stem cell" or "piPS cell."
Various recombinant proteins have been developed to treat a variety of illnesses so the pharmaceutical industry has experience with this type of technique. It would provide an economical way to produce the piPS cells. More work needs to be done but the Scripps researchers have provided an exciting ‘proof of principle' that it is possible to prod8ce stem cells without genetic manipulation.
"We are very excited about this breakthrough in generating embryonic-like cells from fibroblasts [cells that gives rise to c
onnective tissue] without using any genetic material," said Dr. Ding. "Scientists have been dreaming about this for years."
A group of researchers led by Scripps Institute scientist Dr. Sheng Ding have developed a safer way to generate stem cells for therapeutics.
Several years ago, Japanese researchers were able to ‘turn back the clock' and transform adult skin cells from mice into stem cells by the addition of four genes. Later researchers were able to do the same for human cells. However, while the stem cell lines could be used for research, they were not suitable for use in therapy since the added genes remain in the cell and are associated with the growth of cancerous tumors.
The Scripps Research Institute team was able to chemically reprogram the cells. They used recombinant proteins which are combinations of DNA fragments from various organisms. They experimented to find the exact combinations needed to turn adult skin cells from mice into embryonic stem cells. They were then able to guide their development into neurons, pancreatic and cardiac cells. This new type of stem cell is called a "protein-induced pluripotent stem cell" or "piPS cell."
Various recombinant proteins have been developed to treat a variety of illnesses so the pharmaceutical industry has experience with this type of technique. It would provide an economical way to produce the piPS cells. More work needs to be done but the Scripps researchers have provided an exciting ‘proof of principle' that it is possible to prod8ce stem cells without genetic manipulation.
"We are very excited about this breakthrough in generating embryonic-like cells from fibroblasts [cells that gives rise to c
onnective tissue] without using any genetic material," said Dr. Ding. "Scientists have been dreaming about this for years."
This our cure. Stem cells can cure anything. It wil take three treatments ad your life is changd. Me and Gary are still looking into this. My Dad saved up money to hep his HD children. It is expensive. You can find foundations that will help you get them cheaper.
Posted by Heather Dugdale at 9:53 PM 0 comments
Friday, July 24, 2009
Helping functions
There are more people that go to events and fundraisers. Thank you people. I have got extra people to events on here. I have got extra people to show up. Thanks you people that care. We can't sit here and ignore the problem. You help. I help. Let's stick together and raise awareness. I got bike tours places to stay in the States. Thanks to you people. We can do good togther.
Posted by Heather Dugdale at 2:28 PM 0 comments
UK family
I got sent an urgent leter for a UK couple wanting their inal vaction. I posted it here and one WEAREHD.org.
It actually worked
This article appeared the flollowing week.
Couple will be beside the sea on last holiday
A husband who appealed for money to take his bed-ridden wife on what could be her final holiday to Blackpool has been flooded with donations, thanks to Keighley News readers.
Trevor Bailey said he and his wife, Dawn, who is in the final stages of Huntington’s Disease, were “gobsmacked” by the number of goodwill gestures they had received after their plight was featured in last week’s KN.
The Huntington’s Disease Association (HDA) usually collates the amount needed for the couple to go on their annual Blackpool holiday but hard economic times meant it was left with a £290 shortfall for them to return to the seaside resort where they once courted. But now kind donations from members of the public and businesses mean that the couple will not only be able to make next month’s trip but might also be able to go away again in October for Dawn’s birthday, if she is well enough.
Mr Bailey, who gave up his job to look after his wife several years ago, had told the Keighley News that taking Dawn along the beachfront was “the only thing that put a smile on her face”.
He added: “We have been to Blackpool for the past four years and we look forward to it, it is a change of scenery from looking at these four walls and we really need the break.”
After receiving the donations this week, he said: “It is unbelievable what some people have donated. They have been coming in left, right and centre and they are still coming in.
“One elderly lady came and gave us £5 which she had drawn from her pension and said ‘this is all I can afford but I hope it can be put towards you and your wife going on holiday’ which was lovely.
“Whatever people have given, we just want to say thank you very, very much - it has made us very happy and we get to go on two holidays away together now.”
Among those who have donated are Highfield Bowling Club, GHD Hair Styling and Barcroft Autos 2000 Ltd based in Halifax Road, Keighley, which has donated £290 to the couple, and a businessman who wanted to remain anonymous who has given £1,000.
Owner of Barcroft Autos, Nigel Wooler, said: “I was reading the story and thinking how sad it was that they were short of that money so I wanted to give them it.
“I hope they have a lovely holiday.”
HDA regional care advisor Peter Burns said the donations would be put into a trust fund for Dawn.
He said: “I have been absolutely blown away by the response from the Keighley community.
“It doesn’t mater how much people could afford, it is the thought that counts.
“The people who donated this money wanted it to go to them so I will make sure it does.”
It actually worked
This article appeared the flollowing week.
Couple will be beside the sea on last holiday
A husband who appealed for money to take his bed-ridden wife on what could be her final holiday to Blackpool has been flooded with donations, thanks to Keighley News readers.
Trevor Bailey said he and his wife, Dawn, who is in the final stages of Huntington’s Disease, were “gobsmacked” by the number of goodwill gestures they had received after their plight was featured in last week’s KN.
The Huntington’s Disease Association (HDA) usually collates the amount needed for the couple to go on their annual Blackpool holiday but hard economic times meant it was left with a £290 shortfall for them to return to the seaside resort where they once courted. But now kind donations from members of the public and businesses mean that the couple will not only be able to make next month’s trip but might also be able to go away again in October for Dawn’s birthday, if she is well enough.
Mr Bailey, who gave up his job to look after his wife several years ago, had told the Keighley News that taking Dawn along the beachfront was “the only thing that put a smile on her face”.
He added: “We have been to Blackpool for the past four years and we look forward to it, it is a change of scenery from looking at these four walls and we really need the break.”
After receiving the donations this week, he said: “It is unbelievable what some people have donated. They have been coming in left, right and centre and they are still coming in.
“One elderly lady came and gave us £5 which she had drawn from her pension and said ‘this is all I can afford but I hope it can be put towards you and your wife going on holiday’ which was lovely.
“Whatever people have given, we just want to say thank you very, very much - it has made us very happy and we get to go on two holidays away together now.”
Among those who have donated are Highfield Bowling Club, GHD Hair Styling and Barcroft Autos 2000 Ltd based in Halifax Road, Keighley, which has donated £290 to the couple, and a businessman who wanted to remain anonymous who has given £1,000.
Owner of Barcroft Autos, Nigel Wooler, said: “I was reading the story and thinking how sad it was that they were short of that money so I wanted to give them it.
“I hope they have a lovely holiday.”
HDA regional care advisor Peter Burns said the donations would be put into a trust fund for Dawn.
He said: “I have been absolutely blown away by the response from the Keighley community.
“It doesn’t mater how much people could afford, it is the thought that counts.
“The people who donated this money wanted it to go to them so I will make sure it does.”
Posted by Heather Dugdale at 2:26 PM 0 comments
Going to the Lake today
Today me and Trevor are going to the lake.
Posted by Heather Dugdale at 2:20 PM 0 comments
Thursday, July 23, 2009
Another Ear infection
I have another ear infection. I will tell you what the Doctors say. We have to go to the hospital tonight. I hate getting these. I just wish they would go away. I will update later. I will not blog. I have another fever. I went for a walk and could not walk straight. I went to the Gleaner's and tried to ignore the pain.
Posted by Heather Dugdale at 1:38 PM 0 comments
Wednesday, July 22, 2009
As I was thinking.
I am part of PREDICT HD. Sometimes with my dementia I forget stuff, and always adding. It is another predictive study. You do you check ups and that is it.
Posted by Heather Dugdale at 7:48 PM 0 comments
Stem Cells/ Gained Weight!
Every day there is another breakthrough. Every day brings more hope. It is real. They are here. Cures are coming. The countdown will stop. That Stem Cell conference looks promising. They are trying in California to get HD into the California Stem cell Counsition. I am still thinking they will work. I had people that said I am crazy for talking about Stem cells. I just find out earlier then other people. I give it earlier here. They just thought if George Bush had them blocked, that meant they were, bad. They have been used for ten years now. I still like China. I would not recommend any medical trips until this bird flu is over. That is what is stalling us. That flu has taken alot of people in my Province. I research everything thoroughly. We got the trails to do, COHORT and we want Creatine. With our early onset, we really help with COHORT. Creatine PHASE #3. We can't wait for October. We have been waiting two years for this trail. Come one with me. Do the with me. Want to find a cure. Do this and we can find them. We had one study here. We needed 220 people. They could not met that. I get emails from Clinical trails. We need to step it up. I do everything with Gary. My Creatine has me weighing 23lbs now. That's in all in one month's use. My Nurse's brought me more Boost. I am having problems keeping food down this month. Do what feels right. Don't let HD get the best to of us. Fight it off our backs. We do not need you HD. We are stronger. We are wiser. We don't ever give in. Always fight with me. I love Obamba.
Posted by Heather Dugdale at 6:42 PM 0 comments
US AUG Events
COLORADO
Saturday, August 15, 2009
Team Hope Walk- Denver
Saturday, August 15th, 2009
Stapleton Central Park
Martin Luther King and Central Park Blvd
Denver, Colorado
Come join us for a brisk walk on a beautiful August morning. Enjoy great food, beverages and entertainment for all ages. Have more fun by forming a team of friends, family, neighbors and co-workers and walk together to help raise money to find a cure for Huntington’s Disease!
Registration/Check-in: 8:00AM
Walk Begins: 9:00AM.
Early Registration: $35 for Walk and T-Shirt.
Register a team of 4 or more for $25 each
Day of Registration: $45 for Walk and T-Shirt
Registration & event information:
To register or create a fundraising page: http://www.firstgiving.com/hdsa-rm
For more information on sponsorship or general information, contact Kendell Aitchison at
(303) 837-9937 or kaitchison@hdsa.org
THANK YOU AND HOPE TO SEE YOU THERE!
Friday, August 07, 2009
Rockin with Rockwell- Rocky Mountain Chapter
Norman Rockwell Illustrations in “Living Art” with 50’s and 60’s Music
Friday, August 7, 7:30Saturday, August 8, 2 and 7:30PMRialto Theater 228 East Fourth Street Loveland, CO
Norman Rockwell illustrations come to life when local residents pose in front of beautifully painted backgrounds! Hear the music of Elvis, Frankie, Rosemary, Sinatra and see dances performed from that wonderful era. Fun for the entire family. Volunteers needs: all ages and genders to pose, dance, sing and assist backstage. Contact gayleann8@hotmail.com or call 970-443-5352.
FLORIDA
Sunday, August 02, 2009
18th Annual HD Triathlon- South Florida Chapter
For more information please contact:hdtri@bellsouth.net
ILLINOIS
Sunday, August 02, 2009
HDSA Annual Golf Outing- Illinois Chapter
Antioch Golf Club
WHERE:
Antioch, IL
For more information please contact:Augustinemarchetti@sbcglobal.net
Friday, August 28, 2009
Celebration of Hope- Illinois Chapter
If you cannot attend this event but would like to make a contribution please go to http://www.firstgiving.com/COHIL
For more information please contact:please contact Blanca McCarthy at (312) 265-5840 or by email, bmccarthy@hdsa.org
Registered users can request event reminders.
MICHIGAN
Friday, August 07, 2009
Bowl for HD- Michigan Chapter
Imperial Lanes
Hall Road (M59) & Garfield in Clinton Township
44650 Garfield Road
Clinton Township, MI 48038
Cost: $25 each will get you two (2) games of cosmic bowling, shoes & pizza/pop and one entry into a raffle of your choice.
After Party: Private Karaoke party will take place in Imperial's bar after.
For more information please contact:Krissi Putansu 586-822-1730
NEW YORK
Monday, August 03, 2009
Meet the Mets
Registered users can request event reminders.
OHIO
Saturday, August 08, 2009
Team Hope Walk-Ohio Valley Chapter
Team Hope Walk
Ohio Valley Chapter
August 8, 2009
For more information please contact:
Melissa Worthington
920-428-1091
mworthington@hdsa.org
PENNSYLVANIA
Saturday, August 29, 2009
Adult Camp/Retreat- Delaware Valley Chapter
For more information please visit: http://www.hdsadv.org/
Saturday, August 29, 2009
2009 Overnight Retreat – Hanging Together- Delaware Valley Chapter
Event Date: August 29th to August 30th
Start Time: 10 AM on the 29th
End Time: 1 PM on the 30th
Event Location: Variety Club Camp, Valley Forge and Potshop Roads, Worcester, PA
Description of event: August 29th to the 30th the Delaware Valley Chapter of HDSA will once again host a retreat for individuals in the early to mid stage of Huntington’s Disease. This year’s theme is Hanging Together. Returning attendees enjoy renewing acquaintances while those new to the event quickly get to know everyone through the games and leisure time activities offered in both the indoor and outdoor camp setting. Naps and overnight sleeping is done in a rustic dormitory. One of the most appreciated activities during the retreat is swimming in the indoor heated pool and s’mores and a camp fire, weather permitting. It is not often that you are offered a free get away weekend. We hope you will plan on Hanging with us.
Ticket Price/Cost : Free
What does it include: Two days, one night at a rustic camp setting with fun activities, good food, dormitory sleeping accommodations, and the opportunity to make new friends
For more information contact: Joanne M. Luz, Chapter Social Worker
Phone: 610-260-0420 or 1-877-384-3721
E-mail: jluz@hdsa.org
Website: www.hdsadv.org
WISCONSIN
Sunday, August 09, 2009
Team Hope Walk- Madison Wisconsin
Team Hope Walk
Madison, Wisconsin
August 9, 2009
Registration 8:30AM
Walk 10AM
8:30AM
Elver Park Shelter
Elver Park
1250McKenna Blvd.
Madison, WI 53719
To register online please go to:
www.firstgiving.com/hdsateamhope
For more information please contact:
Karla King
kking4hd@gmail.com
608-235-8660
Melissa Worthington
920-428-1074
Saturday, August 15, 2009
Team Hope Walk- Denver
Saturday, August 15th, 2009
Stapleton Central Park
Martin Luther King and Central Park Blvd
Denver, Colorado
Come join us for a brisk walk on a beautiful August morning. Enjoy great food, beverages and entertainment for all ages. Have more fun by forming a team of friends, family, neighbors and co-workers and walk together to help raise money to find a cure for Huntington’s Disease!
Registration/Check-in: 8:00AM
Walk Begins: 9:00AM.
Early Registration: $35 for Walk and T-Shirt.
Register a team of 4 or more for $25 each
Day of Registration: $45 for Walk and T-Shirt
Registration & event information:
To register or create a fundraising page: http://www.firstgiving.com/hdsa-rm
For more information on sponsorship or general information, contact Kendell Aitchison at
(303) 837-9937 or kaitchison@hdsa.org
THANK YOU AND HOPE TO SEE YOU THERE!
Friday, August 07, 2009
Rockin with Rockwell- Rocky Mountain Chapter
Norman Rockwell Illustrations in “Living Art” with 50’s and 60’s Music
Friday, August 7, 7:30Saturday, August 8, 2 and 7:30PMRialto Theater 228 East Fourth Street Loveland, CO
Norman Rockwell illustrations come to life when local residents pose in front of beautifully painted backgrounds! Hear the music of Elvis, Frankie, Rosemary, Sinatra and see dances performed from that wonderful era. Fun for the entire family. Volunteers needs: all ages and genders to pose, dance, sing and assist backstage. Contact gayleann8@hotmail.com or call 970-443-5352.
FLORIDA
Sunday, August 02, 2009
18th Annual HD Triathlon- South Florida Chapter
For more information please contact:hdtri@bellsouth.net
ILLINOIS
Sunday, August 02, 2009
HDSA Annual Golf Outing- Illinois Chapter
Antioch Golf Club
WHERE:
Antioch, IL
For more information please contact:Augustinemarchetti@sbcglobal.net
Friday, August 28, 2009
Celebration of Hope- Illinois Chapter
If you cannot attend this event but would like to make a contribution please go to http://www.firstgiving.com/COHIL
For more information please contact:please contact Blanca McCarthy at (312) 265-5840 or by email, bmccarthy@hdsa.org
Registered users can request event reminders.
MICHIGAN
Friday, August 07, 2009
Bowl for HD- Michigan Chapter
Imperial Lanes
Hall Road (M59) & Garfield in Clinton Township
44650 Garfield Road
Clinton Township, MI 48038
Cost: $25 each will get you two (2) games of cosmic bowling, shoes & pizza/pop and one entry into a raffle of your choice.
After Party: Private Karaoke party will take place in Imperial's bar after.
For more information please contact:Krissi Putansu 586-822-1730
NEW YORK
Monday, August 03, 2009
Meet the Mets
Registered users can request event reminders.
OHIO
Saturday, August 08, 2009
Team Hope Walk-Ohio Valley Chapter
Team Hope Walk
Ohio Valley Chapter
August 8, 2009
For more information please contact:
Melissa Worthington
920-428-1091
mworthington@hdsa.org
PENNSYLVANIA
Saturday, August 29, 2009
Adult Camp/Retreat- Delaware Valley Chapter
For more information please visit: http://www.hdsadv.org/
Saturday, August 29, 2009
2009 Overnight Retreat – Hanging Together- Delaware Valley Chapter
Event Date: August 29th to August 30th
Start Time: 10 AM on the 29th
End Time: 1 PM on the 30th
Event Location: Variety Club Camp, Valley Forge and Potshop Roads, Worcester, PA
Description of event: August 29th to the 30th the Delaware Valley Chapter of HDSA will once again host a retreat for individuals in the early to mid stage of Huntington’s Disease. This year’s theme is Hanging Together. Returning attendees enjoy renewing acquaintances while those new to the event quickly get to know everyone through the games and leisure time activities offered in both the indoor and outdoor camp setting. Naps and overnight sleeping is done in a rustic dormitory. One of the most appreciated activities during the retreat is swimming in the indoor heated pool and s’mores and a camp fire, weather permitting. It is not often that you are offered a free get away weekend. We hope you will plan on Hanging with us.
Ticket Price/Cost : Free
What does it include: Two days, one night at a rustic camp setting with fun activities, good food, dormitory sleeping accommodations, and the opportunity to make new friends
For more information contact: Joanne M. Luz, Chapter Social Worker
Phone: 610-260-0420 or 1-877-384-3721
E-mail: jluz@hdsa.org
Website: www.hdsadv.org
WISCONSIN
Sunday, August 09, 2009
Team Hope Walk- Madison Wisconsin
Team Hope Walk
Madison, Wisconsin
August 9, 2009
Registration 8:30AM
Walk 10AM
8:30AM
Elver Park Shelter
Elver Park
1250McKenna Blvd.
Madison, WI 53719
To register online please go to:
www.firstgiving.com/hdsateamhope
For more information please contact:
Karla King
kking4hd@gmail.com
608-235-8660
Melissa Worthington
920-428-1074
Posted by Heather Dugdale at 2:55 PM 0 comments
Tuesday, July 21, 2009
Bocchie
I had a fun time playing with my special friends. We lost by one point, today. All of our games are really close. Trevor is getting more burnt out. He works two jobs, and helps look after me. They will not give any kind of respite. Even though I help out with the second job. Things will get better. They have too. It will not bring both of us down. Only up. Always flip over, and see the sunshine. The sunshine is what keeps us going. We need it to survive. Fight for the good side. Try not to look at the bad side. It will get you know where bout down. Find and fight. Stay in the light. Fight for the light.
Posted by Heather Dugdale at 5:55 PM 0 comments
More Updates
My yahoo group, stopped letting me post. I added WEAREHD.org as my support group. I am one of the site leaders there. Come check it out. I will answer any questions you have there. there are tons of people like us on there. I have been there since it started. It is still going strong. Come make friends with me or others, like us.
Posted by Heather Dugdale at 2:07 PM 0 comments
Help get the HD Pairty Act Passed
Help get the HD Pairty Act Passed
A list of reps to co-sponcer the Bill.
http://capwiz.com/hdsa/issues/alert/?alertid=13747351
A list of reps to co-sponcer the Bill.
http://capwiz.com/hdsa/issues/alert/?alertid=13747351
Posted by Heather Dugdale at 1:33 PM 0 comments
Monday, July 20, 2009
Graphic Design Contest
I honored to be invited in this contest. I really believe in Gay Rights. The day Matthew was killed, was the first hate crime. His Mom is trying to make it the last.
The Matthew Shepard Foundation is going to be adding a limited edition stainless steel water bottle to our online store and we want you to design it! If you think you have what it takes to design awesome artwork to wrap around the bottle, then check the submission guidelines below!
The winning design will be featured on the MSF Limited Edition water bottle and win an iPod Touch and a Erase Hate gift basket featuring items from our online store!
Submission Guidelines
Deadline: 8:00 am MT July 28, 2009
Size: 5.5" wide by 7.75" long.
Colors: Two Colors Maximum
Must contain the following text:Replacing Hate with Understanding, Compassion and Acceptance.
The winning design will be featured on the MSF Limited Edition water bottle and win an iPod Touch and a Erase Hate gift basket featuring items from our online store!
Submission Guidelines
Deadline: 8:00 am MT July 28, 2009
Size: 5.5" wide by 7.75" long.
Colors: Two Colors Maximum
Must contain the following text:Replacing Hate with Understanding, Compassion and Acceptance.
Posted by Heather Dugdale at 7:51 PM 0 comments
Accpeting
We have to accept before we can have peace. You can't see sunshine without seeing and accepting HD. A world in denial is not want . We need to breathe. We need to see HD. My family was never in denial. I knew in grade 6, that I had a fifty-fifty shot. You need to know what is going on. What can explain what is going on. HD information, is how we learn. You accept the fact you are at-risk.. Accept the way we have HD.. We got this in our genes. It is not going to go away. We need to see HD and it will open our eyes. Once our eyes are open, we can see. We can show. We can see the light. The light is there. It is blinding. Take off your blinders and you will be happy.
Posted by Heather Dugdale at 5:40 PM 0 comments
The World Stem Cell Summit unites
The World Stem Cell Summit unites the stem cell universe of researchers, ReGEN industry leaders, funders, medical philanthropies, policy-makers, advocates, educators and regulators to chart the future of regenerative medicine.
Posted by Heather Dugdale at 1:55 PM 0 comments
Huntington's: Researchers Gain Insight Into Mechanism Underlying The Disease
"Mutations - the genetic changes in DNA - can lead to many different types of disease, depending on where and in what manner they occur," Li said. "How these genetic changes escape normal DNA repair systems and become ingrained in an affected gene pool leading to familial disorders has been a longstanding subject of study in my laboratory at the UK Medical Center."
Posted by Heather Dugdale at 12:15 PM 0 comments
Friday, July 17, 2009
Forgiveness
Forgiveness makes life better. Holding onto grudges can hold us down. Forgive others. Forgive yourself. We aren't HD. We are people. We have feelings. Forgive us. HD is not us. Never forget the person inside. It is the person that matters. Don't blame yourself. Don't blame others. Accept the fact that we have HD. It is there. It is real. It is how we deal with it that makes the difference. Our fight makes the difference. We need to accept HD in our lives. It will help us role with punches. I am excited to see the next Harry Potter. There is a Lake Park there, we like going for hikes there. They have a cool duck island.
Posted by Heather Dugdale at 6:19 PM 1 comments
Thursday, July 16, 2009
More Updates
I updated my info. What I found told me, that if you gain weight, it helps with your Chorea.
Posted by Heather Dugdale at 8:04 PM 0 comments
Excited to Join my 2nd study/ Creatine Phase 3
My little boy is so smart. I dropped my meds this morning. Me my Nurse found one. Lucky's nose pointed to the other one. It was amazing to see him do that. He was smart enough to firgure we were looking for somethingI have been really healthy the past month. Hardly any HD. No symptoms. My meds are stable. It has been months since I had my last halluncation. I can't tell you how long.When we went and saw DR, Trew in Calgary, he told me I get a facial twitch from my high dose of Epival. I rather be stable, then care about that. I have a healthy liver, and can take more adjustment if be. We are going to see the new Harry Potter this weekend. We are also going to get more Creatine. Trevor does not want me to go with out. I love being part of COHORT. It is a study where Neros figure out HD from genetic testing, to HD progression. Gary and I are in that one. I have been in that for 7 years now. It is good for them. My family is rare. We all have low CAGS, and yet we get it so early. We also will be doing Creatine together too. They will pay for gas and the Creatine. If you want to do a study. They will pay everything. Calgary is 6 hours away.They pay gas. They want people to enter and will do anything to do it. Help me. Help us find a a cure. HD trials are the responsibilities of all us. If you have HD, you are responsible for your health care. Why not find a cure will testing it yourself. We need you.
Posted by Heather Dugdale at 4:43 PM 0 comments
Prenatal Testing
Pregnancy is an exciting time, but it can also be challenging and full of decisions. Each clinic visit seems to hold new options, including options to learn about your baby's genetic health before he or she is born.
Some individuals decline all genetic screening and prenatal testing; this is a perfectly acceptable choice. Others choose a form of genetic screening to determine the chance that their baby might have a chromosome abnormality, like Down syndrome.
This can be done by either a first trimester screen or quad marker screen. The main difference between the two is when they take place. A first trimester screen will give you this information between weeks 11 and 14 of pregnancy; a quad marker screen usually doesn't take place until week 16.
A second-trimester ultrasound is also considered a prenatal screening test. Although it won't tell you details about the baby's genetic makeup, it will provide an assessment of the baby's anatomy to see if any birth defects exist. Since certain birth defects can be associated with genetic conditions, it may indirectly give you information about the chance that your baby has a genetic condition.
One of the main benefits of prenatal screening is that you can learn the chance that your baby has genetic condition without putting the pregnancy at risk; this is different than diagnostic testing. Diagnostic testing will give you a definitive answer about the baby's number and overall structure of chromosomal material, but carries with it a small risk for miscarriage.
Two options for diagnostic prenatal testing include amniocentesis and chorionic villus sampling (CVS). Amniocentesis is generally done after 14 weeks of pregnancy; CVS is done between weeks 10 and 12 of pregnancy. CVS is a slightly more invasive test, but provides the information at an earlier gestational age. However, it does carry a slightly higher risk for miscarriage than amniocentesis.
Meeting with a genetic counselor can be exceptionally helpful in making a decision about the best options to pursue, if any, during your pregnancy. One of the most important questions to ask yourself during this time is "What will you do with the information you learn?" Please, share your experiences and feedback for our readership
Posted by Heather Dugdale at 3:23 PM 0 comments
10 tips for better sleep
10 tips for better sleep
If you're having trouble sleeping, change your sleep habits for a better night's rest.
Feeling crabby lately? It could be you aren't getting enough sleep. Work, household responsibilities and child care can make sleep difficult to come by. Factor in other unexpected challenges, such as financial worries, layoffs, relationship issues or an illness, and quality sleep may be even more elusive.
You may not be able to control or eliminate all of the factors that interfere with your sleep, but you can create an environment and adopt habits that encourage a more restful night. Try these suggestions if you have trouble falling asleep or staying asleep:
Go to bed and get up at about the same time every day, even on the weekends. Sticking to a schedule helps reinforce your body's sleep-wake cycle and can help you fall asleep more easily at night.
Don't eat or drink large amounts before bedtime
Eat a light dinner at least two hours before sleeping. If you're prone to heartburn, avoid spicy or fatty foods, which can make your heartburn flare and prevent a restful sleep. Also, limit how much you drink before bed. Too much liquid can cause you to wake up repeatedly during the night for trips to the toilet.
Avoid nicotine, caffeine and alcohol in the evening. These are stimulants that can keep you awake. Smokers often experience withdrawal symptoms at night, and smoking in bed is dangerous. Avoid caffeine for eight hours before your planned bedtime. Your body doesn't store caffeine, but it takes many hours to eliminate the stimulant and its effects. And although often believed to be a sedative, alcohol actually disrupts sleep.
Exercise regularly. Regular physical activity, especially aerobic exercise, can help you fall asleep faster and make your sleep more restful. However, for some people, exercising right before bed may make getting to sleep more difficult.
Make your bedroom cool, dark, quiet and comfortable. Create a room that's ideal for sleeping. Adjust the lighting, temperature, humidity and noise level to your preferences. Use blackout curtains, eye covers, earplugs, extra blankets, a fan or white-noise generator, a humidifier or other devices to create an environment that suits your needs.
Sleep primarily at night. Daytime naps may steal hours from nighttime slumber. Limit daytime sleep to about a half-hour and make it during midafternoon. If you work nights, keep your window coverings closed so that sunlight, which adjusts the body's internal clock, doesn't interrupt your sleep. If you have a day job and sleep at night, but still have trouble waking up, leave the window coverings open and let the sunlight help awaken you.
Choose a comfortable mattress and pillow. Features of a good bed are subjective and differ for each person. But make sure you have a bed that's comfortable. If you share your bed, make sure there's enough room for two. Children and pets are often disruptive, so you may need to set limits on how often they sleep in bed with you.
Start a relaxing bedtime routine. Do the same things each night to tell your body it's time to wind down. This may include taking a warm bath or shower, reading a book, or listening to soothing music. Relaxing activities done with lowered lights can help ease the transition between wakefulness and sleepiness.
Go to bed when you're tired and turn out the lights. If you don't fall asleep within 15 to 20 minutes, get up and do something else. Go back to bed when you're tired. Don't agonize over falling asleep. The stress will only prevent sleep.
Use sleeping pills only as a last resort. Check with your doctor before taking any sleep medications. He or she can make sure the pills won't interact with your other medications or with an existing medical condition. Your doctor can also help you determine the best dosage. If you do take a sleep medication, reduce the dosage gradually when you want to quit, and never mix alcohol and sleeping pills. If you feel sleepy or dizzy during the day, talk to your doctor about changing the dosage or discontinuing the pills.
But if you have trouble sleeping on a regular or frequent basis, see your doctor. You could have a sleep disorder, such as obstructive sleep apnea or restless legs syndrome. Identifying and treating the cause of your sleep disturbance can help get you back on the road to a good night's sleep.
Posted by Heather Dugdale at 3:19 PM 0 comments
Stress management
Stress management
Yesterday was not a good day. As so often happens, my best laid plans went astray. I was tangled in thorny administrative issues while trying to deal with difficult clinical challenges. A research proposal was shredded by a committee. Finally, some scheduling goofs occurred and colleagues were inconvenienced. We all have days like this when — despite our best planning — the wheels come off.
Reflecting on the day, I was reminded of a couple of key points:
How we react is our choice. We are humans and sometimes things just do not go the way we hope. However, if we dwell on the negatives and focus on the mix-ups, we will lose energy and find it difficult to get back on task.
We need support from others. When I arrived home that evening, I shared my frustrations with my beloved wife and running partner Peggy.
Life is a long-distance event. You have to be fit to go the distance. The next morning I completed my workout: stretching, calisthenics and free weights. This routine takes no more than 35 minutes and is absolutely life-sustaining and rejuvenating, as is my usual eight-mile run.
In the end, did the problems and the frustrations of the day disappear? Of course they didn't, but I had a clearer mind, renewed focus and more energy to go back into the arena and give it my all.
What other lessons can we learn from our bad days?
Yesterday was not a good day. As so often happens, my best laid plans went astray. I was tangled in thorny administrative issues while trying to deal with difficult clinical challenges. A research proposal was shredded by a committee. Finally, some scheduling goofs occurred and colleagues were inconvenienced. We all have days like this when — despite our best planning — the wheels come off.
Reflecting on the day, I was reminded of a couple of key points:
How we react is our choice. We are humans and sometimes things just do not go the way we hope. However, if we dwell on the negatives and focus on the mix-ups, we will lose energy and find it difficult to get back on task.
We need support from others. When I arrived home that evening, I shared my frustrations with my beloved wife and running partner Peggy.
Life is a long-distance event. You have to be fit to go the distance. The next morning I completed my workout: stretching, calisthenics and free weights. This routine takes no more than 35 minutes and is absolutely life-sustaining and rejuvenating, as is my usual eight-mile run.
In the end, did the problems and the frustrations of the day disappear? Of course they didn't, but I had a clearer mind, renewed focus and more energy to go back into the arena and give it my all.
What other lessons can we learn from our bad days?
Posted by Heather Dugdale at 3:17 PM 0 comments
Wednesday, July 15, 2009
Live Happy With Me
There is much research going on that is hard to forget. Everyday is another breakthrough. Everyday the earth moves. Everyday we keep living. We can never give up. Look future forward. We don't have to die anymore. HD is not a death sentence. Live and enjoy everyday. Every second should be fun. Every second can be great. Live your life in the carefree zone. Carefree is our life. Carefree is my life. I am like you. We fight the same battle. Everyday we get up and fight again. Fight for every smile. Fight for every laugh. We deserve to be happy. We deserve life. We deserve life. live happy with me.
Posted by Heather Dugdale at 6:50 PM 0 comments
Renwed Reseach Survey
I did one of thesee in Canada.
You can check out. Dr. Ready here:
If you live in the US and would like to participate in this Quality of Life Survey, see the below.
<ready@PSYCH. UMASS.EDU>Subject: Volunteers for On-line Research StudyHello HD Discussion Members,Please see below for an announcement about an on-line study about Quality of Life in persons affected by Huntington's Disease.Many thanks and please send questions to ready@PSYCH. UMASS.EDURegards,Rebecca E. Ready, Ph.D.University of Massachusetts
<ready@PSYCH. UMASS.EDU>Subject: Volunteers for On-line Research StudyHello HD Discussion Members,Please see below for an announcement about an on-line study about Quality of Life in persons affected by Huntington's Disease.Many thanks and please send questions to ready@PSYCH. UMASS.EDURegards,Rebecca E. Ready, Ph.D.University of Massachusetts
Quality of Life In Huntington's Disease Research Study1. Are you diagnosed with Huntington's disease?2. Or are you at risk for Huntington's disease?3. Do you have a friend or family member who knows you well?
You must be 18 years of age or older to participate. If you match the above criteria, you might be eligible to participate in a research study conducted by investigators at the University of Massachusetts, Amherst. The goal of this research study is to develop a valid and reliable questionnaire about quality of life in Huntington's disease.
Persons are asked to complete questionnaires, either online or at UMass.
Just send an email to readylab@psych. umass.edu to say that you meet the criteria (or if you have questions). Or, if you meet the criteria, you can just go ahead and get started:The study involves completing questionnaires online (compensation is $20) or at the University of Massachusetts, Amherst(compensatio n is $30). We ask that you have a close companion also participate; they are compensated the same amounts. The study will take about 1 hour or less. If you are eligible to participate and you are in the Amherst, Massachusetts area, it would be great if you could come to the University to participate. If not, you are welcome to do the study on-line:
Participant Survey: http://www.surveymo nkey.com/ s.aspx?sm= d_2fJUMgVQUBRHFQ N8yS0aYQ_ 3d_3
dCompanion Survey: http://www.surveymo nkey.com/ s.aspx?sm= 1gJAotDzZteiCAwz RynMeg_3d_ 3d
Please ask someone who knows you well to complete the companion survey. Companions can be 18 years of age or older.
Please ask someone who knows you well to complete the companion survey. Companions can be 18 years of age or older.
Participants will be invited to return in approximately 2 weeks to complete a few of the questionnaires again; this follow-up session will last no more than 30 minutes and is optional.
For more information, please contact: Emily or Katie, Research Assistants, Department of Psychology, University of Massachusetts, Amherst: Call (413) 545-5258 or readylab@psych. umass.eduRebecca E. Ready, Ph.D.Assistant ProfessorDepartment of PsychologyUniversity of MassachusettsTobin Hall 609135 Hicks WayAmherst, MA 01003413-545-1359
Posted by Heather Dugdale at 6:36 PM 0 comments
FOR IMMEDIATE RELEASERESEARCHERS ID BRAIN-PROTECTING PROTEIN
Johns Hopkins researchers have discovered a novel protein that can protect brain cells by interrupting a naturally occurring "stress cascade" resulting in cell death.
Reporting in the July 16 issue of the journal Neuron, the scientists say drugs mimicking the protein, nicknamed GOSPEL, have the potential to protect brain cells against a range of neurodegenerative conditions, including stroke and Alzheimer's and Huntington's diseases."This work has potentially broad clinical implications," says senior author Akira Sawa, M.D., Ph.D., director of molecular psychiatry.Sawa and his team, in collaboration with Johns Hopkins neuroscientist Solomon Snyder, M.D., and his team, conducted experiments showing that GOSPEL competes with a second protein when it tries to latch on to glyceraldehyde-3-phosphate dehydrogenase or GAPDH, a multifunctional molecule. By binding to GAPDH itself, GOSPEL both prevents the cell death cascade and offers brain cells protection against potentially toxic agents.Sawa has spent more than a decade studying GADPH activity and its role in so-called oxidative-stress-induced cellular responses, including programmed cell death.That cascading process begins when various stressors such as injury or disease activate a complex enzyme, nitric oxide synthase, which then forms nitric oxide, a chemical that transmits signals between nerves but also is toxic to cells. Excess levels of nitric oxide cause GAPDH to undergo a chemical modification called S-nitrosylation that in turn lets it bind to another protein called Siah1. The combined GAPDH-Siah1 molecules then move into a cell's nucleus, hijack key portions of its DNA and set off a chain of reactions leading to cell death.In the currently reported study, the researchers analyzed tissue samples from rats to identify the DNA coding for GOSPEL (which stands for GAPDH's competitor Of Siah Protein Enhances Life) and found that the protein exists in tissues in the brain, heart, lung and skeletal muscle, though it is most widely expressed in neurons in the central nervous system.A series of laboratory experiments in mouse brain tissue found that S-nitrosylation is necessary to enable GOSPEL to bind to GAPDH; that GOSPEL competes with Siah for GAPDH binding; that GOSPEL prevents GAPDH from slipping into the cell nucleus; and that GOSPEL diminishes brain cell damage by preventing the binding of GAPDH and Siah.To determine whether GOSPEL's neuroprotective actions were evident in live mice, the scientists used a benign virus to deliver either GOSPEL or an altered version of GOSPEL lacking the property to bind with GAPDH into the animals' brains. They then injected a neurotransmitter, NMDA, to induce and simulate other kinds of brain damage. The researchers found that NMDA-induced lesions in the brains of mice injected with GOSPEL were about 30 percent smaller than in those injected with the altered GOSPEL, showing that the neuroprotective influence of GOSPEL related to its ability to bind to GAPDH.The GOSPEL molecule was first available in the database of the Human Genome Project, Sawa says, but until now was designated as a genetic compound with no known properties.
Posted by Heather Dugdale at 6:31 PM 0 comments
2nd Annual Trey Gray Tee Off for a Cure
2nd Annual Trey Gray Tee Off for a Cure
Friday September 25, 2009
Hermitage Golf Course in Nashville3939
Old Hickory Blvd
Old Hickory, TN
37138-2242
Honorary chair Kix Brooks will be up for auction and will play 9 holes with each of the two highest bidders. Kix Brooks and Ronnie Dunn, along with other celebrity artists, will be playing with and assisting the golfers. Golfers and guests will be entertained by local musicians and will be able to bid on such items as music and sports memorabilia, vacation packages, gift certificate for fine dining and much more. Raffle items and door prizes are also available.Cost to participate is $175 per person or $650 per foursome. A limited sponsorships are available and range in price from $100-$20,000.To register for the golf tournament or for more information about sponsoring, please call
615.732.9220
or email
http://ca.mc564.mail.yahoo.com/mc/compose?to=grayhd%40yahoo.com. 11 a.m. - Registration, putting contest and lunch will begin b.. 1 p.m. The tournament begins c.. 6 p.m. event will conclude with dinner, silent auction, and an awards presentation Donations to the 2nd Annual Trey Gray Tee Off for a Cure can be made online at:
Posted by Heather Dugdale at 6:23 PM 0 comments
Trey Gray Tee Off
Many of you got to met Trey Brooks at Amanda and James Rinkle's recent Old Mill Festival HD fundraiser in Howe, Indiana. Well if you know any golfers living near Tennessee, please let them know about the below event! Hmmmm, I just got a GPS systems for my car, it's about 14 hours from my place....... .I bet Tennessee is beautiful in September!!! !Isn't this FANTASTIC: - Trey and Lisa's intention for this event is to raise $150,000 or more that may provide seed money for an HD Center of Excellence in TN and to raise at least $1,000,000 by 2012 to generate funds for ongoing support of the Center of Excellence and the HDSA Chapter in Tennessee.2nd Annual Trey Gray Tee Off for a Cure
Local musician is drumming up awareness of neurological disease with 2nd annual golf tournament.Columbia, TN, July 13, 2009 Trey Gray, award-winning drummer with the legendary country music duo, Brooks and Dunn, is a man on a mission. He and wife Lisa are working to create awareness of Huntington's Disease, a hereditary and incurable neurological disease that affects over 14,000 Tennesseans, including Trey. Their goal is to generate sufficient interest and support for the establishment of a Huntington's Disease Society of America (HDSA) Chapter in Tennessee and the creation of an HD Center of Excellence at Vanderbilt University.Gray hopes to raise $150,000 or more with the second annual Trey Gray Tee off for a Cure Golf Tournament on Friday September 25, 2009 at the Hermitage Golf Course in Nashville. Honorary chair Kix Brooks will be up for auction and will play 9 holes with each of the two highest bidders. Kix Brooks and Ronnie Dunn, along with other celebrity artists, will be playing with and assisting the golfers. The format is a 4-man scramble with a shotgun start. Registration, putting contest and lunch will begin at 11 a.m. The tournament begins at 1 pm. and will conclude with dinner, silent auction, and an awards presentation scheduled for 6 p.m. Golfers and guests will be entertained by local musicians and will be able to bid on such items as music and sports memorabilia, vacation packages, gift certificate for fine dining and much more. Raffle items and door prizes are also available.Cost to participate is $175 per person or $650 per foursome. A limited number of sponsorships are available and range in price from $100-$20,000. Proceeds will support national research into a cure or treatment for Huntington's as well as local education and support services for victims and families of HD. Trey and Lisa's intention for this event is to raise $150,000 or more that may provide seed money for an HD Center of Excellence in TN and to raise at least $1,000,000 by 2012 to generate funds for ongoing support of the Center of Excellence and the HDSA Chapter in Tennessee.The golf tournament is one of many national events scheduled for 2009 to benefit the funding and advancement of research, education, and care programs of HDSA. To register for the golf tournament or for more information about sponsoring,
please call 615.732.9220 or
email http://ca.mc564.mail.yahoo.com/mc/compose?to=grayhd%40yahoo.com. Donations can be made online at:
HD is a devastating, fatal, and hereditary neurological disease that destroys the brain. It brings tragedy and a legacy of economic, social, and emotional pain and suffering. HD symptoms include mood swings, incoordination, depression, difficulty speaking or swallowing, forgetfulness, and involuntary twitching. Huntington's serves as a "model" for other neurodegenerative and genetic disorders like Parkinson's, ALS and Alzheimer's, which affect millions of Americans.About Huntington's Disease Society of AmericaHDSA is a national non-profit voluntary agency that is dedicated to finding a cure for Huntington's disease while providing vital services to improve the lives of those affected by HD. Support and guidance is provided to HD families through a network of volunteer affiliates, Chapters and Centers of Excellence which provide access to cutting edge research, support service for patients and families, and genetic counseling. The American Institute of Philanthropy has designated HDSA as a top-rated charitable organization, with an A rating. Over 88¢ of each dollar raised goes directly to research, education, or support services. For more information on Huntington's Disease Society of America, please visit the
HDSA web site at
Media Contact:Lisa Gray 615.732.9220
Posted by Heather Dugdale at 6:15 PM 0 comments
More Updates
I updated my HD info and Research Page.
Posted by Heather Dugdale at 5:02 PM 0 comments
Tuesday, July 14, 2009
How to De-Stress a Recession-Riddled Life
How to De-Stress a Recession-Riddled Life
Recessions are bad for the stress level, as many in the midst of the current economic situation know and surveys prove.
Recessions are bad for the stress level, as many in the midst of the current economic situation know and surveys prove.
Perhaps not surprisingly, nearly half of the 1,791 adults polled for the American Psychological Association's latest Stress in America survey said that their stress had increased in the past year. As a result, more than half reported fatigue, 60 percent said they
were irritable or angry, and more than half said they lie awake at night because of stress.
Other researchers have found that stress adds years to a person's life but that those who cope with it effectively have higher levels of what's known as "good" cholesterol.
Other researchers have found that stress adds years to a person's life but that those who cope with it effectively have higher levels of what's known as "good" cholesterol.
But for those who say it's impossible to cope because of a lost job, a retirement account that's virtually disappeared and a house that's plummeted in value, consider the advice of two veteran stress-reduction experts.
Dr. Paul J. Rosch is president of the American Institute of Stress and a clinical professor of medicine and psychiatry at New York Medical College. Deborah Rozman is a research psychologist and chief executive of Quantum Intech, the parent company of the HeartMath Institute in Boulder Creek, Calif., which conducts research on stress management.
As coping strategies, they advise people to:
Volunteer. This might sound counterproductive or even crazy: If you're worried about your job or already laid off, shouldn't you be looking for another? But Rozman insists it's a great strategy.
"Volunteering actually opens you up to possibilities," she said. Volunteering most anywhere -- at the church picnic, the local 5K run, the food bank -- can help get your mind off your problems, she said. It also will "reopen the heart," she said, "because the heart gets shut down when you worry."
Practice appreciation and gratitude. This isn't as difficult as it might sound, Rozman said. "If you still have a job, appreciate that," she said. Just like volunteering, this "helps the heart stay open." And she believes it will also help you reconnect with feelings of hope.
Follow traditional de-stress advice, but tweak it. To de-stress, people are supposed to exercise, eat right, find a way to calm down. But it's crucial to find the technique or techniques that work for you, Rosch said.
"You have to find out what works for you so that you will practice and adhere to it because it relieves tension and makes you feel better," he said. "Jogging, meditation, progressive muscle relaxation, yoga and listening to music are great for some but dull, boring and stressful when arbitrarily imposed on others."
Decrease the drama in your life. Rozman said that it's typical for people who've been laid off or fear losing their jobs to sit around and complain. But that only adds to the stress and drama, she said.
"Drama is when we amp up anger, anxiety or fear," she said. So if you find yourself in the midst of a woe-is-me conversation, she said, don't add to it by complaining more. Rather, try to change the subject or the tone. She suggests talking about how to improve things, not how bad things are.
Ration your news diet. The news can be full of bad economic tidings, 24/7. So limit your viewing, Rozman suggested. Decide what amount you can watch and still keep a balance between being informed and being dragged down.
Stop the comparisons. "Don't compare the present with the past," Rozman said. It's natural but depressing. Instead, give yourself time to heal after a job loss or other major setback and then move on.
And rather than thinking, "I've lost my nest egg," try: "Here's what I'll do to get it back," she said.
"It's about shifting focus to something that doesn't bring you down," Rozman added.
Posted by Heather Dugdale at 7:38 PM 0 comments
Exersize
I have been really healthy the past week. No chorea or anything. If you exercise it helps Creatine. Always exercise. Fight and never give up. Everyday I do aerobics, walk Lucky, and use the exercise equipment my Dad brought me. When he was down he gave me more to do along wit the WII. I got a step for aerobics. Get an exercise ball. It all helps balancing do all three. My OT was over and noticed my weight gain and my chorea free days. Today was fun. They added a new water park. The Handy Bus takes me an hour early. It is in the same park we do Boccie at. I played with the kids. They sprayed me with water. We had fun. I was on of the favoured babysitters back home. Kids love me. At one water park, me and Gary can't swim. We had a group of young kids trying to help us. I did so well out of Boccie. I won 7 out of 10 rounds for my team. The ball was heavy. Before Creatine, I used to have a problem lifting bowling ball. Keep up and don't let HD take that power away. Exercise. Don't give up. My Dad told me to never stop exercising, It is the thing that can make the dead rise again. Do you want to give up, or do you want to fight for your life. Exercise keeps me healthy. Do something fun. Join the Special Olympics with me. Gary has his licence back now. He barely pasted the physical. He wanted to go so bad. Now he can go do all the sports he wants to. My family is insane when it comes to sports. Gary used to play Hockey and Rugby. They have a Special O Hockey 45 minutes from him. When I strarted he wanted to go so bad. Now he can. I used to play basket ball, volley ball, and badminton.
Posted by Heather Dugdale at 6:13 PM 0 comments
Survey
Please see below for an announcement about an on-line study about Quality of Life in persons affected by Huntington's Disease. Many thanks and please send questions to
Regards,Rebecca E. Ready, Ph.D.University of Massachusetts
Quality of Life In Huntington’s Disease Research Study
1. Are you diagnosed with Huntington’s disease?
2. Or are you at risk for Huntington’s disease?
3. Do you have a friend or family member who knows you well?
If you match the above criteria, you might be eligible to participate in a research study conducted by investigators at the University of Massachusetts, Amherst. The goal of this research study is to develop a valid and reliable questionnaire about quality of life in Huntington’s disease. Persons are asked to complete questionnaires, either online or at UMass. Compensation will be provided.
For more information, please contact
:Emily or Katie,
Research Assistants,
Department of Psychology,
University of Massachusetts,
Amherst: Call (413) 545-5258 or
readylab@psych.umass.edu
Rebecca E. Ready, Ph.D.Assistant Professor
Department of Psychology
University of Massachusetts
Tobin Hall
609135 Hicks Way
Amherst, MA
01003413-545-1359
Posted by Heather Dugdale at 1:08 PM 0 comments
Monday, July 13, 2009
More About Isis
It is coming a year early then it was two months ago when I first got it. Now it seems more feasible then ever. I was right. This is our cure. the generations s will stop. No one has to die anymore. The hope that I gave you a year and half go still holds strong. I knew then. You learned then. Countdown for the cure will end a year later then the last estimate. It will still be here. My Mom told me we get cured. She was right. I am right. The future is ours. What will you do when it all goes away. What will you do when HD is flushed out of or sometimes.
Dr. Alejandro Lloret in his office at Isis (photo by HDSA-San Diego)
Speaking with the scientists at Isis Pharmaceuticals, Inc., you get a sense of the crucial human ingredients going into the creation of what could be the very first treatment for Huntington’s disease.
The men and women on the Isis team clearly are highly talented, many of them with advanced degrees from some of the world’s leading universities. Isis recruits top scientists from around the world – just walk down its halls and you will meet people from Asia, Europe, Mexico, and different parts of the United States. They use a highly specialized scientific vocabulary but know how to make it understandable to the average person.
Isis people are focused, driven, enthusiastic, and dedicated to their mission to find treatments and cures for diseases.
History in the making
And they are imaginative, using a cutting-edge technology – antisense – in which few people or investors put stock but which could revolutionize the pharmaceutical industry.
You get the feeling at Isis that history is being made – quietly, but confidently and inexorably.
The Isis team knows it bears a huge responsibility. Their work is about improving – and saving – lives.
For all of this to work, compassion is necessary.
community about Huntington’s disease.) As an undergraduate, he studied the genetics of yeast and gradually worked his way up the chain of life to humans.
At Harvard, Dr. Lloret worked with other scientists in the search for so-called modifier genes for Huntington’s disease. Whereas the defective huntingtin gene, discovered in 1993, is the root cause of Huntington’s, researchers believe that the modifier genes could determine other aspects of the disease, for example, the age of onset. As with defective huntingtin, which Isis aims to block in its multi-million-dollar effort to find a Huntington’s antisense drug, the modifier genes could become targets for drugs.
Dr. Lloret spent four years on the Harvard project. It could still take several years before a modifier gene is found, he said.
A life-changing experience
The lab work on modifier genes was long and demanding and had no connection to the everyday realities of the disease. But then, after meeting a young woman at a Huntington’s disease meeting in England several years ago, Dr. Lloret had an experience that abruptly changed his life.
“We sat at the same table. She was smoking one cigarette after another. And I just kept wondering, ‘Why is this girl smoking so much?’” he recalled. “And I think she knew what I was thinking. She just looked me straight in the eyes and said, ‘If I have to choose between dying of Huntington’s disease and of cancer, I choose to die of cancer.’
“She was 18 years old. She had the mutation. She told me that she eventually will develop the disease. She was amazed to meet someone that was working on the disease that she will eventually develop. That for me was a shock. Working in a lab is not the same thing as meeting the patients.
“That’s when I decided to go back to the lab and redouble my efforts on my research, because I wanted to help her. I don’t want her to die of either of those diseases. That’s terrible. That was the turning point in my career.”
Meeting the patients
Since then, Dr. Lloret has had much contact with people suffering HD symptoms as well as asymptomatic, at-risk individuals. He has visited patients and given talks on the disease in Mexico City.
In November 2006 he was deeply moved by further contact with HD when he attended the annual Thanksgiving dinner at the Guthrie Center in Great Barrington, Mass. “They read a piece of a journal from a patient with Huntington’s disease,” Dr. Lloret recalled. “He said that every single day that passes, there was little bit of him that was dying – that each word that he was placing in that journal, was a word that he will not remember the next day.”
Dr. Lloret at work in the lab (photo by HDSA-San Diego)
In August 2008 Dr. Lloret came to Isis, where he spends half of his time on the Huntington’s project and the other half on Parkinson’s disease. He is directly involved in research on treatments. He understands the urgent need to bring relief to sufferers of Huntington’s – the “flagship of neurodegenerative diseases” – and many similar maladies that can benefit from HD research.
“I think this is the most terrible disease in the world,” he said resolutely. “If there is a definition of hell, this would be it. It’s a disease that kills you really slowly. The first thing that impacted me is that the onset is between 35 and 45 years old. That is the age when people are in the prime of life. They have their families. They have their lives. All of a sudden everything is taken away. It’s slow and it’s painful – not only for them, but also for their families. For every single patient that has the disease, there are ten people that are affected by it.
“You’re seeing your loved one decline. He cannot control himself or herself, and then all of a sudden they’re in a bed. You have to take care of him for the next ten years and you’re not able to do anything for him, just to watch him die slowly. That’s what impacted me the most. It affects every aspect of your life. And also it affects your cognitive part – not being able to recognize the people who love you.”
The thought of that suffering is what motivates Dr. Lloret and the Isis team to forge ahead with search for a Huntington’s disease treatment.
Posted by Heather Dugdale at 7:34 PM 0 comments
Blog: Eyes on the prize Gray and I are doing phase three of Creatine in October
CoQ10 and Creatine
Dr. M. Flint Beal and colleagues have found that creatine and CoQ10 each exert neuroprotective effects in a mouse model of HD and that neuroprotection increases when both are administered.
That demand for energy is probley why I gained back my strengh and weight.
Both supplements boost energy metabolism which is known to be impaired in HD patients. In addition, both are antioxidants and oxidative damage is known to be a problem in HD. Creatine and CoQ10 are each in Phase III (final) clinical trials conducted by the Huntington Study Group as a result of promising results in mouse models and Phase I and II trials.
Should both be found effective, doctors and patients will need to know whether they should be taken in combination or whether there is no additional benefit to taking more than one of the supplements.
Creatine and CoQ10 affect cellular energy through different mechanisms. Creatine plays a key role in energy buffering between the mitochondria and the cytosol of the cell which is especially important in cells with a high demand for energy. CoQ10 is a cofactor in the electron transport chain which is part of the process by which energy is produced in the mitochondria. CoQ10 accepts electrons from Complex I and II and transfers them to Complex III.
Dr. Beal and colleagues provided the R6/2 mice with a diet which included two percent creatine or one percent CoQ10 or both and compared the results for the three groups with R6/2 mice which were fed a regular diet. The CoQ10 group did better on the rotorod test of motor performance and survived longer than the control group. The creatine group did better than the CoQ10 group while the group which received both did best of all.
The results suggest that research into whether HD patients would benefit from taking both is worth pursuing. ”If both CoQ10 and creatine show efficacy in … HD trials, then future studies of the two compounds in combination may be warranted. A combination of the two compounds would also be a promising approach for treating pre-symptomatic individuals, since both compounds are natural products and are well-tolerated with few side effects,” the authors conclude.
“Combination therapy with coenzyme Q10 and creatine produces additive neuroprotective effects in models of Parkinson's and Huntington's diseases.”
Coenzyme Q(10) (CoQ(10)) and creatine are promising agents for neuroprotection in neurodegenerative diseases via their effects on improving mitochondrial function and cellular bioenergetics and their properties as antioxidants. We examined whether a combination of CoQ(10) with creatine can exert additive neuroprotective effects in a MPTP mouse model of Parkinson's disease, a 3-NP rat model of Huntington's disease (HD) and the R6/2 transgenic mouse model of HD. The combination of the two agents produced additive neuroprotective effects against dopamine depletion in the striatum and loss of tyrosine hydroxylase neurons in the substantia nigra pars compacta (SNpc) following chronic subcutaneous administration of MPTP. The combination treatment resulted in significant reduction in lipid peroxidation and pathologic alpha-synuclein accumulation in the SNpc neurons of the MPTP-treated mice. We also observed additive neuroprotective effects in reducing striatal lesion volumes produced by chronic subcutaneous administration of 3-NP to rats. The combination treatment showed significant effects on blocking 3-NP-induced impairment of glutathione homeostasis and reducing lipid peroxidation and DNA oxidative damage in the striatum. Lastly, the combination of CoQ(10) and creatine produced additive neuroprotective effects on improving motor performance and extending survival in the transgenic R6/2 HD mice. These findings suggest that combination therapy using CoQ(10) and creatine may be useful in the treatment of neurodegenerative diseases such as Parkinson's disease and HD.
Dr. M. Flint Beal and colleagues have found that creatine and CoQ10 each exert neuroprotective effects in a mouse model of HD and that neuroprotection increases when both are administered.
That demand for energy is probley why I gained back my strengh and weight.
Both supplements boost energy metabolism which is known to be impaired in HD patients. In addition, both are antioxidants and oxidative damage is known to be a problem in HD. Creatine and CoQ10 are each in Phase III (final) clinical trials conducted by the Huntington Study Group as a result of promising results in mouse models and Phase I and II trials.
Should both be found effective, doctors and patients will need to know whether they should be taken in combination or whether there is no additional benefit to taking more than one of the supplements.
Creatine and CoQ10 affect cellular energy through different mechanisms. Creatine plays a key role in energy buffering between the mitochondria and the cytosol of the cell which is especially important in cells with a high demand for energy. CoQ10 is a cofactor in the electron transport chain which is part of the process by which energy is produced in the mitochondria. CoQ10 accepts electrons from Complex I and II and transfers them to Complex III.
Dr. Beal and colleagues provided the R6/2 mice with a diet which included two percent creatine or one percent CoQ10 or both and compared the results for the three groups with R6/2 mice which were fed a regular diet. The CoQ10 group did better on the rotorod test of motor performance and survived longer than the control group. The creatine group did better than the CoQ10 group while the group which received both did best of all.
The results suggest that research into whether HD patients would benefit from taking both is worth pursuing. ”If both CoQ10 and creatine show efficacy in … HD trials, then future studies of the two compounds in combination may be warranted. A combination of the two compounds would also be a promising approach for treating pre-symptomatic individuals, since both compounds are natural products and are well-tolerated with few side effects,” the authors conclude.
“Combination therapy with coenzyme Q10 and creatine produces additive neuroprotective effects in models of Parkinson's and Huntington's diseases.”
Coenzyme Q(10) (CoQ(10)) and creatine are promising agents for neuroprotection in neurodegenerative diseases via their effects on improving mitochondrial function and cellular bioenergetics and their properties as antioxidants. We examined whether a combination of CoQ(10) with creatine can exert additive neuroprotective effects in a MPTP mouse model of Parkinson's disease, a 3-NP rat model of Huntington's disease (HD) and the R6/2 transgenic mouse model of HD. The combination of the two agents produced additive neuroprotective effects against dopamine depletion in the striatum and loss of tyrosine hydroxylase neurons in the substantia nigra pars compacta (SNpc) following chronic subcutaneous administration of MPTP. The combination treatment resulted in significant reduction in lipid peroxidation and pathologic alpha-synuclein accumulation in the SNpc neurons of the MPTP-treated mice. We also observed additive neuroprotective effects in reducing striatal lesion volumes produced by chronic subcutaneous administration of 3-NP to rats. The combination treatment showed significant effects on blocking 3-NP-induced impairment of glutathione homeostasis and reducing lipid peroxidation and DNA oxidative damage in the striatum. Lastly, the combination of CoQ(10) and creatine produced additive neuroprotective effects on improving motor performance and extending survival in the transgenic R6/2 HD mice. These findings suggest that combination therapy using CoQ(10) and creatine may be useful in the treatment of neurodegenerative diseases such as Parkinson's disease and HD.
Posted by Heather Dugdale at 7:12 PM 0 comments
Completed Studies
Completed
A Study of the Novel Drug Dimebon in Patients With Huntington's Disease
Condition:
Huntington's Disease
Interventions:
Other: Placebo; Drug: Dimebon
2
Completed
Safety Study of the Novel Drug Dimebon to Treat Patients With Huntington's Disease
Condition:
Huntington's Disease
Intervention:
Drug: Dimebon
3
Completed
Individuals' Patterns of Disclosure About Huntington's Disease (HD) and the Association With Adaptation to HD
Conditions:
Huntington's Disease; Disclosure
Intervention:
4
Completed
Safety and Tolerability Study of Phenylbutyrate in Huntington's Disease (PHEND-HD)
Condition:
Huntington's Disease
Intervention:
Drug: sodium phenylbutyrate
Posted by Heather Dugdale at 7:01 PM 0 comments
UK HDA fundraising: Charity runs
HDA fundraising: Charity runs
Sign up for the 5km Big Fun Run - August, September & October 2009
June 2009
The HDA have teamed up with the Big Fun Run this year as one of their official charities. We have signed up to take part in all of the Big Fun Run events taking place across the country during August, September and October 2009.
If you'd like to take part in any of the events to raise money for the HDA, registration couldn't be simpler: please either enter online at
http://www.bigfunrun.com/, remembering to select the HDA as your chosen charity, or download the
or contact our Head Office for an
entry form on 0151 298 3298,
email info@hda.org.uk.
When you have registered, we will send you a copy of our Fundraising Information Pack which provides some useful hints and tips for raising sponsorship money.
Thank you for your support!
Posted by Heather Dugdale at 6:56 PM 0 comments
UK HDA fundraising: London Marathon 2010
HDA fundraising: London Marathon 2010
Virgin London Marathon If you are interested in running the 2010 Virgin London Marathon to support the HDA, the application process is now open until October 2009. For an application form, please contact
Head Office on 0151 298 3298
or email info@hda.org.uk.
£12,000. Thank you to all of our runners and their supporters for raising so much money to support our work.
Posted by Heather Dugdale at 6:53 PM 0 comments
Loving Creatine/ Three Year Anniverary
I am loving Creatine. I have so much more muscle and weight now. I could not hold onto big pots and heavy doors. Now. the strengh is coming in my arms. I am becoming like I was before HD. I am 118 lbs now. I gained 2lbs in two weeks. I totally feel like I am not weak at all anymore. My muscle is back. I feel stronger. Trevor thinks it is the Creatine that is helping me do this.Got weighed at my Nero's. I just can't believe what is happening too my brain, since my muscle is getting healthy. It is way cheap then COQ10. That stuff is 160 dollars and you get 50 pills. My Dad got the Creatine at Walmart for 27 dollars. It is recommend because it is cheaper. People have emailed good things about it. I am glad I am going into the study, I get it free, they pay for gas. We are going to see the new Harry Potter this weekend. Trevor can get more for me. Join the study. It is great stuff. We had fun watching the mountain bikes.They have alot of good drivers there. Did amazing things. We even seen triple bikers doing one run. It was cool. We had Terry and Trevor's Grandpa over for a BBQ. We are going on a trip to Kelowna. I get to have fun. When we went for Easter, it was miserable. It is in the desert. It gets highs of + 45. get to enjoy it. Swim in the lake. Trevor and I third anniversary is coming up on Aug 4.We are going to Fairmont. Camp and go into the Farmount holtel. l and go to the hot springs. I never though I could find a man. I found the perfect one. I a love him so much. No matter how sick I get, he will always love me. My social worker told him the difference between Heather and HD. That is when we got engaged. I never though I could find a man. I found the perfect one. I love him so much. No matter how sick I get, he will always love me. I don't think a better man exsists then Trevor. I can't believe it been three years. It comes slowly. It seems like yesterday we got married.
Posted by Heather Dugdale at 4:22 PM 1 comments
Lou Ruvo Brain Institute
Lou Ruvo Brain Institute
888 W. Bonneville Ave.,
Las Vegas, NV
89106
Toll free phone
: 1-888-268-9797 /
Phone: 702-263-9797 /
Fax: 702-260-9797
Cleveland Clinic Lou Ruvo Center for Brain Health
Opens for Business
- The Cleveland Clinic Lou Ruvo Center for Brain Health welcomes its first welcomes its first patients today, opening the doors to an architectural gem and a highly touted model of patient-focused care. The Cleveland Clinic Lou Ruvo Center for Brain Health is a highly specialized clinical center designed to advance the research, early detection and treatment of neurological diseases, including Alzheimer's, Huntington's, Parkinson's and Amyotrophic Lateral Sclerosis (ALS). "We still have much more to accomplish, but welcoming patients and caregivers is a truly significant benchmark for all involved," said Larry Ruvo, a businessman and philanthropist, who named the center for his father, whose last years were spent as a victim of Alzheimer's disease. "It's certainly a day worth celebrating for all those afflicted or involved with Alzheimer's, Parkinson's, Huntington, A.L.S. and other neurodegenerative diseases who have worked so hard to make this effort a reality."
The center's mission is to prevent the disabling symptoms of chronic brain diseases and to prolong healthy, vital aging in people at risk for dementia or cognitive disorders, through the use of Cleveland Clinic's patient-centered, research-based Institutes model. This model of care enables the entire healthcare team to pool their wisdom and expertise for the benefit of the patient, linking various specialists across organ systems or disease states - such as Neurology, Cancer or Cardiology - to deliver improved patient care. "Applying our model of care to the treatment of cognitive disorders promises to improve the quality of life for countless Americans," said Delos "Toby" Cosgrove, Cleveland Clinic's CEO and president. "By integrating clinical care, research and prevention under one roof, we can streamline and improve care for our patients. Coordinating care in this way can have a broad economic impact on our healthcare system by reducing administrative costs and putting the focus on quality." At the helm of the Center is Dr.
Randolph Schiffer, formerly of the Vernon and Elizabeth Haggerton Chair in Neurology at the Clinic, and Dr. Charles Bernick, a world renowned specialist with more than twenty years of experience in the field of Alzheimer's disease. "The opportunity to make a difference in the lives of patients with cognitive disorders couldn't come at a better time," said Dr. Schiffer, noting the continuing increase in these afflictions "to epidemic proportions
Posted by Heather Dugdale at 3:48 PM 0 comments
Brain Excersize Video
This video shows how exercise helps us.
Posted by Heather Dugdale at 3:42 PM 0 comments
Sunday, July 12, 2009
Korea Badge
I am nominated for a Korea Award. I put up the badge in my awards page.
Posted by Heather Dugdale at 8:49 PM 0 comments
Won A Huge International Award
LAUDATION - BEGIN >>>>
It is our privilege to award your web site Heathers Huntington's Disease Page the O.N.Z.C.D.A Merit Award and congratulate you on your efforts.
A story of never-ending hope set amidst the tragedy of an ongoing family medical inheritance created by Huntington's Disease. Displaying videos, articles, research and personal stories this web site provides a great resource for any person who wishes to know more about this tragic illness.
Posted by Heather Dugdale at 7:22 PM 0 comments
Thursday, July 9, 2009
Goat Mountian Bike Jam
We are going to the Goat mountain bike jam. It is a mountain bike competition. They have bike demos and contest all day. I will not be blogging tomorrow. I will be at the midnight jam. They will be biking with lights. It sounds like fun. Last year it rained and got cancelled. We are excited. The real truth is here. We are going to get cured. We can plan our future. We can have dreams. Live out your life, with a smile on your face. It is here. Hope is here. Hope has come. It is here to stay. It is here for good. It will never fade into the darkness. Protect yourself. Don't give in. Fight for your hope. Fight to be healthy. he fight is always worth it. Countdown for the cure will not last long. It will end soon. A cure will come. The generations will stop.
Posted by Heather Dugdale at 8:01 PM 0 comments
Wednesday, July 8, 2009
Live Life
Live life. Be free. Don't let HD throw you down. Fight. Fight with all of your might. Fight with all of your strength. Fight and live. Don't HD tear you down. Live your life. You have the control. You have the wheels of your life. Drive away. Don't look back. Live your life. Make a future. Make a future for yourself. Don't let HD tear you part. make your own life. make it great. Live it great. Life should always be worth it.
Posted by Heather Dugdale at 8:46 PM 0 comments
Mindfulness — Embrace the moment and reduce stress
In this blog we often talk about how to deal with the incredible onslaught of pressures, expectations and demands we face every day. Many readers practice a technique called "mindfulness."
Mindfulness is staying focused, engaged and completely absorbed in the task at hand. It means staying in the moment and not being distracted by phone calls or emails — or worries about the past or future.
Mindfulness is staying focused, engaged and completely absorbed in the task at hand. It means staying in the moment and not being distracted by phone calls or emails — or worries about the past or future.
I recently experienced mindfulness in a way that may be different from what you picture when you hear that term. I had the opportunity to address a group of professionals on issues of health and wellness. These were high-octane performers, and they had committed to spending 90 minutes with me. I did not want them to regret that decision.
I was totally absorbed in trying to meet the audience's needs. I did not let myself become distracted by worrying about the clock or jumping ahead to what I had to do at work later that day. I knew that I could not afford to lose focus. The 90 minutes flew by in the wink of any eye. And I think — at least I hope — that I met my listeners' needs.
Please share your examples of total engagement and mindfulness. We are all seekers, and we learn from each other.
Posted by Heather Dugdale at 1:38 PM 0 comments
Clinical trials: A chance to try evolving therapies
Clinical trials offer you a chance to try new treatments. Should you participate in a clinical trial? Learn more about how clinical trials work. Do them with my family.
Posted by Heather Dugdale at 1:34 PM 0 comments
Tuesday, July 7, 2009
Disabilty/How to stay Healthy
My dad is thinking that we should try CCP. They told us that we could not get it. I had to work two years. I was two month short. We even had Parliament people telling us it is not Federal, even though it is. My Dad said Gary and Mom worked less then I did. and Dad got both of them on it. he told us to send it to Ottawa and hopefully we can get it. I went to shool twice. So I have that space. My Mom could never use her Sectary Degree. She got sick at 20. At 28 she got diagnosed. When she was 24 and Scott was born, she got sicker. i did not get sick until I was 23. I lasted long because of my lifestyle. I am straight edge. No drugs or alcohol. I always have been active too. Do that and you can slow it down.
Posted by Heather Dugdale at 7:59 PM 0 comments
Help an HD family
It's wonderful that the UK's Huntington's Disease Association normally can help HD families have a holiday but with donations down, they're unable to help this family this year. If there there is anyone from the UK who wants to help....the contact info at the bottom of the article! Husband bids to take wife on a final holiday
Lisa Campbell A loving husband whose wife is in the last stages of Huntington's Disease has launched a desperate appeal for donations so he can take her on what could be her final holiday. Trevor Bailey, who cares for his 48-year-old wife Dawn, wants to raise enough money to take her away for a week of respite to Blackpool - where they courted after first meeting more than 17 years ago.Usually the Huntington's Disease Association (HDA) manages to source enough cash for the couple to stay in a disability-friendly hotel for a week in August with two carers but this year the economic downturn has hit hard and the charity cannot find a £290 shortfall. Mr Bailey, who gave up his job as a gas fire parts inspector to look after his wife, said that taking Dawn along the beach front was "the only thing that puts a smile on her face". He said: "We have been to Blackpool for the past four years and we look forward to it, it is a change of scenery from looking at these four walls and we really need the break. There is a different atmosphere and people to talk to and we go around the amusements and watch people go on the rides at the Pleasure Beach. "I do everything for Dawn, who is bed-ridden, and I help the carers. She is fed through a tube and we need carers when we go away in case anything happens during the night. We usually cannot plan anything because we do not know what is going to happen but we really get a lot out of this one break a year." Dawn, who lives at Redcliffe Street, in Keighley, and used to be a dinner lady at St Andrew's School in the town, was diagnosed with Huntington's Disease on her 36th birthday. Her mother had died of it and because of this she took the decision never to have children of her own. Mr Bailey is currently writing to organisations appealing for financial help to make a trip to Blackpool happen for his beloved Dawn. Keighley Rotary Club has already donated some funds. Peter Burns, regional care advisor for HAD, said: "This year I haven't succeeded in getting the full amount for Trevor to take his wife on respite to Blackpool for one week, where they used to court, so they can remiss on old times. I have always succeeded in getting the full amount before but it is really hard work this year because of the credit crunch. I am lucky if I get half the amount I usually get from charities this year. "The unfortunate thing about Mrs Bailey is she is bedridden, but she does love Blackpool life. It would just be such a shame for Dawn if she could not go to Blackpool this year, which might be her last time, for the sake of £290."
If anyone can help, contact Mr Bailey
on 07855 151589
or Mr Burns on 0151 298 3298,
e-mail info@had.org.uk.
Posted by Heather Dugdale at 12:30 PM 0 comments
My Family does this Every Year
Amaryllis 2009Now that spring has finally arrived, it’s time to celebrate by thinking about our signature Amaryllis plants coming into bloom. This annual fundraiser raises over $100,000 each year and provides much needed funding. With your support – and the dedication of other Amaryllis volunteers like you –our Amaryllis fundraiser raises critical funds for research, services, and education in the fight against Huntington disease.
Place An Order
Place An Order
The online order form is both secure and efficient, making it easy to place order for yourself, family and friends. Just visit the HSC website
to place an online order, or send an
e-mail to amaryllis@huntingtonsociety.ca
or phone 1-800-998-7398.
For those who have additional questions about the Amaryllis contest, feel free to contact us by phone or e-mail.
Posted by Heather Dugdale at 12:14 PM 0 comments
Huntington's disease deciphered
Researchers at the University of Illinois at Chicago College of Medicine have discovered how the mutated huntingtin gene acts on the nervous system to create the devastation of Huntington's disease. The report of their findings is available in Nature Neuroscience online.
The researchers were able to show that the mutated huntingtin gene activates a particular enzyme, called JNK3, which is expressed only in neurons and, further, to show what effect activation of that enzyme has on neuron function.
Huntington's disease is an adult onset neurodegenerative disease marked by progressive mental and physical deterioration. It has been known for more than a decade that everyone who develops the disease has mutations in a particular gene, called huntingtin, according to Scott Brady, professor and head of anatomy and cell biology at the UIC College of Medicine.
"There are several puzzling aspects of this disease," said Brady, who is co-principal investigator on the study. "First, the mutation is there from day one. How is it that people are born with a perfectly functioning nervous system, despite the mutation, but as they grow up into their 30s and 40s they start to develop these debilitating symptoms? We need to understand why the protein is bad at 40 but it wasn't bad at 4."
The second problem, according to Brady, is that the gene is expressed not just in the nervous system but in other parts of the body. However, the only part of the body that is affected is the nervous system. Why are neurons being affected?
Brady, Gerardo Morfini, assistant professor of anatomy and cell biology at UIC and co-principal investigator of the study, and their colleagues began looking for a mechanism that could explain all the pieces of the puzzle. They found that at extremely low concentrations, huntingtin was a potent inhibitor of axonal transport, the system within the neuron that shuttles proteins from the cell body where they are synthesized to the synaptic terminals where they are needed.
A neuron's critical role in making connections may require it to make the cellular trunk, called an axon, between the cell body and the synaptic terminal to be very long. Some cells have axons that reach half the body's length -- for a tall person, a meter or more. But even in the brain, axonal projections are very long compared to other cells. In addition to the challenge of distance, neurons are very complex cells with many specialized areas necessary to carry out synaptic connections, requiring a robust transport system.
"Inhibition of neuronal transport is enough to explain what is happening in Huntington's," said Brady. Loss of delivery of materials to the terminals results in loss of transmission of signals from the neuron. Loss of signal transmission causes the neurons to begin to die back, leading to reduced transmissions, more dying back and eventual neuronal cell death.
This mechanism also explains the late onset of the disease, Brady said. Activation of JNK3 reduces transport but does not eliminate it. Young neurons have a robust transport system, but transport gradually declines with age.
"If you take a hit when you're very young, you still are making more and transporting more proteins in each neuron than you need," Brady said. "But as you get older and older, the neuron produces and transports less. Each hit diminishes the system further. Eventually, the neuron falls below the threshold needed to maintain cell health."
Brady's group has also linked this pattern of progressive neurodegeneration -- marked by a loss of signaling between neurons, a slow dying back of neurons, and eventual neuron death -- to damage to the transport system in several other hereditary adult-onset neurodegenerative diseases and to Alzheimer's disease.
"There is a common theme and a common Achilles heel of the neuron that underlies all these diseases," Brady said. "We've invented a word, dysferopathy, (from the Greek 'fero', to carry or transport) for these adult-onset neurodegenerative diseases. All have disruption of the axonal transport system in common."
The researchers were able to show that the mutated huntingtin gene activates a particular enzyme, called JNK3, which is expressed only in neurons and, further, to show what effect activation of that enzyme has on neuron function.
Huntington's disease is an adult onset neurodegenerative disease marked by progressive mental and physical deterioration. It has been known for more than a decade that everyone who develops the disease has mutations in a particular gene, called huntingtin, according to Scott Brady, professor and head of anatomy and cell biology at the UIC College of Medicine.
"There are several puzzling aspects of this disease," said Brady, who is co-principal investigator on the study. "First, the mutation is there from day one. How is it that people are born with a perfectly functioning nervous system, despite the mutation, but as they grow up into their 30s and 40s they start to develop these debilitating symptoms? We need to understand why the protein is bad at 40 but it wasn't bad at 4."
The second problem, according to Brady, is that the gene is expressed not just in the nervous system but in other parts of the body. However, the only part of the body that is affected is the nervous system. Why are neurons being affected?
Brady, Gerardo Morfini, assistant professor of anatomy and cell biology at UIC and co-principal investigator of the study, and their colleagues began looking for a mechanism that could explain all the pieces of the puzzle. They found that at extremely low concentrations, huntingtin was a potent inhibitor of axonal transport, the system within the neuron that shuttles proteins from the cell body where they are synthesized to the synaptic terminals where they are needed.
A neuron's critical role in making connections may require it to make the cellular trunk, called an axon, between the cell body and the synaptic terminal to be very long. Some cells have axons that reach half the body's length -- for a tall person, a meter or more. But even in the brain, axonal projections are very long compared to other cells. In addition to the challenge of distance, neurons are very complex cells with many specialized areas necessary to carry out synaptic connections, requiring a robust transport system.
"Inhibition of neuronal transport is enough to explain what is happening in Huntington's," said Brady. Loss of delivery of materials to the terminals results in loss of transmission of signals from the neuron. Loss of signal transmission causes the neurons to begin to die back, leading to reduced transmissions, more dying back and eventual neuronal cell death.
This mechanism also explains the late onset of the disease, Brady said. Activation of JNK3 reduces transport but does not eliminate it. Young neurons have a robust transport system, but transport gradually declines with age.
"If you take a hit when you're very young, you still are making more and transporting more proteins in each neuron than you need," Brady said. "But as you get older and older, the neuron produces and transports less. Each hit diminishes the system further. Eventually, the neuron falls below the threshold needed to maintain cell health."
Brady's group has also linked this pattern of progressive neurodegeneration -- marked by a loss of signaling between neurons, a slow dying back of neurons, and eventual neuron death -- to damage to the transport system in several other hereditary adult-onset neurodegenerative diseases and to Alzheimer's disease.
"There is a common theme and a common Achilles heel of the neuron that underlies all these diseases," Brady said. "We've invented a word, dysferopathy, (from the Greek 'fero', to carry or transport) for these adult-onset neurodegenerative diseases. All have disruption of the axonal transport system in common."
Posted by Heather Dugdale at 12:04 PM 0 comments
Genetic Discrimination
On June 10th, a study was released from researchers at the University of British Columbia which looked at Canadians at risk of developing Huntington's disease, and instances of genetic discrimination
On June 10th, a study was released from researchers at the University of British Columbia which looked at Canadians at risk of developing Huntington's disease, and instances of genetic discrimination
In total, 40 per cent of the respondents reported having experienced unfair treatment because of their risk of developing Huntington's disease, even though none had symptoms. A family history of the disease, rather than the genetic test result, was the predominant reason they gave for discrimination.
The results are published in the British Medical Journal. Click here to read the full study .
For more information on the study please visit
This study has generated much media interest, and is helping bring awareness not only to the issue of genetic discrimination, but also to Huntington disease. The issue was covered by The Globe & Mail. CTV News, Canada AM, the Toronto Star, etc. To follow media coverage of the study please visit the HSC website
HSC sent out a call to action encouraging as many of our friends across Canada to write to the Editor of the Globe and Mail, the Editor of the Toronto Star and to CTV to express their concerns and experiences (if possible) with genetic discrimination. You listened and took the time to write in. Your opinions help further our cause and make it easier for coverage of this issue in the future, as the media knows there is an interest.
Posted by Heather Dugdale at 12:01 PM 0 comments
Support groups in Virginia Beach and Newport News help local families find strength in numbers
Support groups in Virginia Beach and Newport News help local families find strength in numbers
Posted by Heather Dugdale at 11:58 AM 0 comments
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