I am still healthy. My mind is clear. I have been healthy for a week. The Special Olympics every year does the relay for life. I am joining their team. They have ten volunteers and ten of us special people. I did not go bowling today. Trevor and I did not want to get them sick. He took off today. Tomorrow he goes back to work. My fever is gone and so is his. I am going to go bowling with one of our neighbors and Penny. She wants to do Special Olympic bowling too. It sucks because they start next year. It ends in April. The cures are here. They are real. The hope is now. The hope will never fade. It is always here. Never lose sight of your future. Plan your future. Plan your life and just live it. Life is what we make it. Make your life worth living, Fight always to keep afloat in the sea of pain. We have pain. We don’t wallow there. We fight to keep above it. Float with me. Be safe up here. Don’t look at the bottom. Look up here. The sunshine and the light is amazing. Never leave here. This is a great place to lie. Live in the hope. Fight to stay above. Fight all the time. It is a constant battle and we can win. We just have to fight to stay here.
Tuesday, March 31, 2009
CYMER Shoot to Cure HD
CYMER Shoot to Cure HD
Friday, June 5, 2009
6:00pm -10:00pm
At Chargers Park
Mark your calendar for the 8th Annual CYMER Shoot to Cure HD.
This fun-filled, star-studded event is one of the best and most unique parties of the year, and includes a wild speed free-throw shooting contest that you have to see to believe. Join some of your favorite Chargers while sampling some of San Diego's finest food and libations.
And, most important, you will be making a difference in the fight to stop Huntington's Disease.
Free food & drinks from San Diego's favorite restaurants
Enjoy a one-of-a-kind speed free throw contest
Live music
Incredible prizes and silent auction items
Tour Chargers Park
Help find a cure for HD
For more information, contact Natalie Carpenter at 619-225-2255.
Shoot Honorary Chair
Antonio Gates
Friday, June 5, 2009
6:00pm -10:00pm
At Chargers Park
Mark your calendar for the 8th Annual CYMER Shoot to Cure HD.
This fun-filled, star-studded event is one of the best and most unique parties of the year, and includes a wild speed free-throw shooting contest that you have to see to believe. Join some of your favorite Chargers while sampling some of San Diego's finest food and libations.
And, most important, you will be making a difference in the fight to stop Huntington's Disease.
Free food & drinks from San Diego's favorite restaurants
Enjoy a one-of-a-kind speed free throw contest
Live music
Incredible prizes and silent auction items
Tour Chargers Park
Help find a cure for HD
For more information, contact Natalie Carpenter at 619-225-2255.
Shoot Honorary Chair
Antonio Gates
Monday, March 30, 2009
Airplane Ride
I had a fun birthday. The airplane ride was so fun. I got too see the mountains. They were endless. Toppled with snow. I was the secondary driver. We went to see Crawford bay. It was so beautiful, sunset. I said hello to my American friends in Idaho. We are right next door to Idaho. We are going to do it again. Trevor’s family surprised me with a birthday That WII fit is amazing. My balance is 91 percent. My age is down to 31. I am feeling less HD now. The past week I have been healthy. Trevor and I have a bad flu. Our Nurse/ Friend Penny got us some Jell-O’s to calm down our sky high fevers. I have to look after Trevor and make sure he is okay. He has the worst fever ever. We had to miss the Special party. That is the time he got sick. She got us soup and juice too. I took one of those Jell-O’s. It worked good. We took Trevor to emerge, to see if he had Pneumonia again. We are lucky. It is just a flu. He is burning up all over. He is red. We are getting him a Pneumonia shot. Scott has the same problem. He needs to get one too. We are going to take Gary camping when he comes down. My birthday surprise gift is coming from Trevor’s Dad. It is something I need to help. That is all I know. Live and be free. Live your life freely. Live life. This is your only chance. Enjoy it. Love it. Fight for the right for your life to be great. Don’t give up the fight.
Treatment vs. Cure
Treatment vs. Cure
An Introduction to HD Drugs and Supplements
An Introduction to HD Drugs and Supplements
A great article on treatments and cures. Countdown for the cure. It is real. It is here. Hope is here.
Friday, March 27, 2009
Surprise Birthday Party
Today, Trevor is having a surprise party. I just found out now. I will take today off. Don't let HD destroy the good in your life. Let HD lie. You don't have to touch it anymore, just live.
Thursday, March 26, 2009
Airplane ride
I can't blog today. I am going on my surprise birthday airplane ride. I am so excited.
ACR16
Published In 1999 journal of Neurology; There was an HD person who forthe previous 2 years could no longer feed herself or drink withoutspilling. She had moderate chorea (about 40 chorea movements everyminute) and suffered falls about twice a week. She volunteered totake an experimental drug: OSU6162. After one dose her choreadecreased from 40 to 2 movements every minute. And she could feedherself and drink without spilling, and she had no falls for theduration of the study. And all this with minimal transient sideeffects.IT sounds almost too good to be true. But wouldn't a drug like thisbe great?Well . . right now, a whole10 years later we finally DO have achance to try this same kind of drug in the improved 2009 version.This drug is ACR16 now in clinical trial in 17 centers over NorthAmerica.And its not just for chorea. In an earlier short trial (in Europe)it appeared to broadly improve symptoms: motor (chorea and dystonia),emotional (improved depression and decreased anxiety) and improvedmeasures of cognition. AND had no more side effects than placebo.My opinion: We should be running = not walking = to sign up for thisone. If it turns out to be as good as the first one looked, we'llfinally get a very good drug for Huntington. Participating sites at: http://clinicaltrials.gov/ct2/show/NCT00724048?term=Huntington%27s+disease&rank=16With hope and best wishes for us all,
Wednesday, March 25, 2009
Fight
We are expecting lots of money this week. I am a tax write off. We get 40 dollars a day for every day I don’t work. I have to go to the Gleaner’s. They have work for me. Everything is in its place. I have the first Rythmitic Gymnastics that we have done in 3 weeks. I missed it. I am 39 and my agility has improved to 46 for 26. I am 111lbs, they told me to drink ensure every day. I don’t want to go lower. I lost 2.5lbs in four months. I was also forgetting to take it. My Nurses help me remember it. Another HD free day. Everyone needs to take their part in curing HD. We all need too take part in clinical trails. It is the only way we can find cures. The only way we can find treatments. They need have enough people to get these tests done. Join the fight. Join and help. We need people to fight HD. Come be a guinea pig with me. Change the world. Change the future. Try and help us win. Try and help us get answers. They need us to get answers. They can help us if we let them. Fight on our side.
Tuesday, March 24, 2009
Home care services: What services do you need?
Home care services: Asking these questions can help you choose the best provider for your needs. A good article on what to ask when looking for care for a loved one.
Stem cells: What they are and what they do
Stem cells: What they are and what they do
Researchers believe stem cells offer great promise for new medical treatments. Learn about stem cell types, current and possible uses, ethical issues and the state of research. Our cure. Countdown for the cure can stop soon.
Researchers believe stem cells offer great promise for new medical treatments. Learn about stem cell types, current and possible uses, ethical issues and the state of research. Our cure. Countdown for the cure can stop soon.
Early Birthday
Our nice Neighbors through me a early birthday party. They made a cake for us and everyone. That was Lucky’s dog sitter that did that for us. We got lots of nice neighbors. Lot’s of friends. Lots of friends for Lucky. Everyone has a dog here. They will babysit him on my birthday. Trevor has a big surprise. Today Alice dropped by with a new slow cooker for my birthday. She gave us a meal and everything in there too. I had the best day at bowling ever. I was in the 100’s every game. I got a strike and some spares. I am getting better. My spelling is getting g so bad. The HD effect the typing sometimes at night. I had an HD free day. My WIIFIT age is 39. It went down 21 years. My balance is up from 26 to 74 percent. It wants me to train my reflexes so I can control my falling. I am enjoying being a site leader on WEAREHD.org. It is something I had believe since day one. I am glad I got Trevor to join too. Let’s celebrate life. Let’s celebrate. Let’s celebrate for the future. Always future forward. Stay in the clouds. It is happy here. Don’t go down. Fight to be here. We have to fight to keep up our spirits. Do everything to gain the hope. Take the hope. Take your happiness. Gain it for yourself. Make it for yourself. We choose what way we want to go. Come outside into the sun with me.
HART
There is a Huntington’s Disease Study actively recruiting participants in many areas, some of which may be accessible to you or someone you know. (Please see the list of sites and appropriate contact information at the end of this email). It is called HART and is a study of ACR16. The following is a brief description of the study, the qualifications needed to participate, and contact information to learn more or to volunteer to participate in the study.
HART (A Multi-Center, North American, Randomized, Double-Blind, Parallel Group Study Comparing Three Doses of ACR16 Versus Placebo for the Symptomatic Treatment of Huntington Disease)
Study Purpose: To assess the safety of three different doses of ACR16, an experimental drug for Huntington’s disease and to test drug effect on voluntary motor (movement) function, cognition (thinking ability), behavior, depression and anxiety.
Locations: Thirty-five Huntington Study Group (HSG) research centers in the U.S. and Canada (see list and contact information below)
Participants Needed: 220 individuals
• Age 30 years or more who have the diagnosis of Huntington’s disease at mild or moderate stages who meet a specified cognitive (thinking) ability, which will be determined at a screening visit.
• Each participant must have a family member, or other caregiver partner to come to 2 study visits.
• Participants should not be taking Xenazine (tetrabenazine) or neuroleptic medications (like Zyprexa or Risperdal) or certain antidepressants (Paxil, Prozac or Wellbrutrin). Other antidepressants will be allowed. More information on medication requirements can be obtained by a phone call to the investigator at your study location.
Trial Duration: Fourteen weeks and a total of 7 participant visits, 2 of which will require a partner or family member.
Testing Procedures:
• The first or screening visit includes a full physical and Huntington’s neurologic exam, blood, urine and electrocardiogram (EKG). You must be in good health except for Huntington’s, and have subsequent normal lab test results to meet criteria for participation in the trial. If all criteria are met and you are accepted into the trial you will be randomized (by a computer “flip of a coin”) to receive 1 of three different ACR16 doses or placebo and scheduled for your first trial visit.
• You will then have a total of 5 more return visits as part of the active drug clinical trial. Only 2 of the study visits are intensive: the first baseline visit during which you first receive the first dosage of the drug, and the visit at 12 weeks when you have completed the drug course. The other visits will be shorter, one of which is only for laboratory and EKG testing.
• There will be a final visit 2 weeks after you have completed the drug portion of the clinical trial to assess your general medical health.
For more details please call one of the participating sites and please tell the coordinator that you learned about the study through HDTrials.org.
HART (A Multi-Center, North American, Randomized, Double-Blind, Parallel Group Study Comparing Three Doses of ACR16 Versus Placebo for the Symptomatic Treatment of Huntington Disease)
Study Purpose: To assess the safety of three different doses of ACR16, an experimental drug for Huntington’s disease and to test drug effect on voluntary motor (movement) function, cognition (thinking ability), behavior, depression and anxiety.
Locations: Thirty-five Huntington Study Group (HSG) research centers in the U.S. and Canada (see list and contact information below)
Participants Needed: 220 individuals
• Age 30 years or more who have the diagnosis of Huntington’s disease at mild or moderate stages who meet a specified cognitive (thinking) ability, which will be determined at a screening visit.
• Each participant must have a family member, or other caregiver partner to come to 2 study visits.
• Participants should not be taking Xenazine (tetrabenazine) or neuroleptic medications (like Zyprexa or Risperdal) or certain antidepressants (Paxil, Prozac or Wellbrutrin). Other antidepressants will be allowed. More information on medication requirements can be obtained by a phone call to the investigator at your study location.
Trial Duration: Fourteen weeks and a total of 7 participant visits, 2 of which will require a partner or family member.
Testing Procedures:
• The first or screening visit includes a full physical and Huntington’s neurologic exam, blood, urine and electrocardiogram (EKG). You must be in good health except for Huntington’s, and have subsequent normal lab test results to meet criteria for participation in the trial. If all criteria are met and you are accepted into the trial you will be randomized (by a computer “flip of a coin”) to receive 1 of three different ACR16 doses or placebo and scheduled for your first trial visit.
• You will then have a total of 5 more return visits as part of the active drug clinical trial. Only 2 of the study visits are intensive: the first baseline visit during which you first receive the first dosage of the drug, and the visit at 12 weeks when you have completed the drug course. The other visits will be shorter, one of which is only for laboratory and EKG testing.
• There will be a final visit 2 weeks after you have completed the drug portion of the clinical trial to assess your general medical health.
For more details please call one of the participating sites and please tell the coordinator that you learned about the study through HDTrials.org.
The United States of America
Location Site Name Contact Person Telephone No.
CA, La Jolla University of California San Diego Jody Goldstein 858-622-5854
CO, Littleton Colorado Neurological Institute Diane Erickson 303-762-6674
FL, Tampa University of South Florida Marcia McCall 813-974-6022
GA, Augusta Medical College of Georgia Sherry Banks 706-721-2798
IL, Chicago Rush University Medical Center Jeana Jaglin 312-942-5003
IN, Indianapolis Indiana University Joanne Belden 317-278-0868
IA, Iowa City University of Iowa Nancy Hale 319-353-4537
MA, Charlestown Massachusetts General Hospital Angela Hu 617-726-5486
MD, Baltimore Johns Hopkins University Claire Welsh 410-955-1349
MN, Golden Valley Struthers Parkinson's Center Sarah Lenarz 952-993-5495
MO, St. Louis Washington University Pat Deppen 314-362-8548
NY, Albany Albany Medical College Sharon Evans 518-262-6611
NY, Manhasset North-Shore LIJ Jean Ayan 516-562-2426
NY, Rochester University of Rochester Charlyne Hickey 585-341-7525
OH, Cincinnati University of Cincinnati Maureen Gartner 513-558-0018
OH, Columbus Ohio State University Allison Seward 614-688-8672
PA, Philadelphia University of Pennsylvania Lisa Altin 215-829-3582
TX, Dallas University of Texas Southwestern Med Center Amit Gode 214-648-0417
TX, Houston Baylor College of Medicine Alicia Palao 713-798-3974
CANADA
AB, Edmonton University of Alberta Pamela King 780-735-8852
BC, Vancouver University of British Columbia Allison Coleman 604-822-7739
ON, London London Health Sciences Centre Julie Megens 519-663-3404
ON, Markham Markham Centre for Movement Disorders Jane Forsyth 905-472-7082
QC, Montreal CHUM-Hospital Notre Dame Hubert Poiffaut 514-890-8000 EXT 26511
Monday, March 23, 2009
Relay For Life
This weekend I broke our glass slow cooker. The glass shattered. I got glass in my foot. Alice came to help me. She took out the glass and helped me clean up my bloody feet. She helped get the glass mess. She is going to get us one for my Birthday. My Dad thinks we should get one with a glass lid. There is another Special Olympics Spaghetti party. It is the day before my Birthday. Ironic. I still don’t know what Trevor’s surprise is. I am counting down the days to find out. Shirley dropped by, one of Nurses, Breast Cancer Survivor. I will be one her team on the Relay For Life here. I will get a little nice candle for Kaiden, a nice message. They wrap it in a bag. In to the Illuminati. It is a beautiful candle lit vigil for the dead. 1000’s of people show up every year. I have been wanting to do this since the little guy died. His Mom tested negative for HD. She thought she was made to be a Mom. Her little boy ended up getting Leukemia. Trevor and I went to see them as soon as we could. He was in reemission. We thought he could fight forever. 6 months later he died. He was 7. I would be honored to raise money and represent his memory at the Really For Life. He was young. You just don’t forget.
"The Rock and Roll Marathon"
I had this up since December. I want to put it up again in case some of you couldn't remember.
Once again San Diego's premier running event "The Rock and Roll Marathon" is coming up on May 31st 2009. Team HDSA is now recruiting runners to raise both awareness and funds to benefit HDSA research. If you are interested please email Natalie Carpenter @ ncarpenter@hdsa.org or call 619-225-2255. All levels of runners acceptable.
Dimebolin Improves Cognition in Patients With Huntington's Disease: Presented at ADPD
I am so excited for this Dimebolin. Count down for the cure.
Reverse Memory Loss
This an amazing breakthrough. You can get back 12 years of dementia. I can't wait to try it.
Pitt researchers describe molecular '2-step' leading to protein clumps of Huntington's disease
Pitt researchers describe molecular '2-step' leading to protein clumps of Huntington's disease
Friday, March 20, 2009
WCB and their pickets
This is not an HD issue but a political rights issue. I can't stand it when people don't get there right to life and death. The gays and their supporters, military,the victim the greyhound beheading in my home Province. It just makes me sick. What they did to Tammy fay. She was one of hero's. Her family knows that God loves us all. Why else would he create us. He created us sick, poor, wealthy different creeds and colors. It is this Natasha Richarson brought this to a boil. A sweet women who loved to give to AIDS charities. AIDS is one of the diseases Trevor and I's friend died from. She hid it, until she died. She was newly wed too. Two weeks. The horrible part of this is they picket the family. They do not care about them. Do friends and family deserve to see" we hate fags" signs. At a funeral. No one deserves that. This is what they saw about them. It is from their site. You can understand why I am so upset. Let people die in peace.
"WBC TO PICKET THE
FUNERAL OF
NATASHA RICHARDSON
God Appointed the Bunny Slope to
Ensnare the Simple Sluts ofDoomed America!
Thank God for the Bunny Slope of Cursed
Quebec, Canada!
She lived in adultery with RobertFox (he had a living wife).
She raised her sons in the catholic pedophile whorehouse.
She enabledfeces-eating fag beasts by supporting "AIDS
research." God killed her "bisexual" father with AIDS; she had
a duty to thank Godfor his righteousjudgments, not enablefag
filth.
She had a megaphone; she should have done her duty, to love
her neighbor; but she hated her neighbor so shefailed to warn
them not to be proud sinners.
This will be an educational religious picket, with a message for the living;
to wit:
God hates divorce and remarriage! Mark 10:11.
God hates fags and fag enablers! Romans 1:19-32.
Fear God; give him the glory; come out from among the doomed-american
filthy manner of life; be not a partaker of their sins!
1 Timothy 5:22.
Natasha Richardson is in Hell!
American HD Fundraisers
IOWA
Saturday, March 28, 2009
Shoot for a Cure Hoop-a-thon, Bedford
Bedford High School , 11:00AM-2:00 PM
Contact Karen Brown 402.533.4693
or866-248-4243
Saturday, March 14, 2009
Shoot for a Cure- Hoop-a-thon, Des Moines
AIB Activities Center, 2:00-4:00 PM
Contact Sarah O’Neil 515.707.4229
or866-248-4243
Saturday, March 21, 2009
Shoot for a Cure Hoop-a-thon, Storm Lake
Storm Lake Middle School, 11:00 AM-2:00PM
Contact Amanda Damewood 712.200.3076
Or866-248-4243
Saturday, March 28, 2009
Shoot for a Cure Hoop-a-thon, Bedford
Bedford High School , 11:00AM-2:00 PM
Contact Karen Brown 402.533.4693
or866-248-4243
Saturday, March 14, 2009
Shoot for a Cure- Hoop-a-thon, Des Moines
AIB Activities Center, 2:00-4:00 PM
Contact Sarah O’Neil 515.707.4229
or866-248-4243
Saturday, March 21, 2009
Shoot for a Cure Hoop-a-thon, Storm Lake
Storm Lake Middle School, 11:00 AM-2:00PM
Contact Amanda Damewood 712.200.3076
Or866-248-4243
Sunday, March 29, 2009
Shoot for a Cure Hoop-a-thon, Audubon
Audubon High School, 1:00-4:00 PM
Contact Carrie Tibben 515.563.4181
or866-248-4243
MICHIGAN
Saturday, March 14, 2009
Shoot For a Cure Hoop-a-thon -Michigan Chapter
Escanaba High School
WHERE:
500 S Lincoln Road, Escanaba, MI 49829
NEW YORK
Saturday, March 14, 2009
Bowling for Dollars
Upstate New York Chapter
Emcee Dan Grimaldi from the HBO series The SopranosClover Lanes2750 Monroe AveRochester, NY 14618
For more information contact: Maria DeRosa 585-233-2289 mderosa20@hotmail.com
Winnipeg, MBRevvv up your engines
Winnipeg, MBRevvv up your engines & saddle up for a truly fun-filled experience! This is a fun-filled family day.This is a family trip so the route will be a rider friendly scenario and will be about 50 kms in length.Location: Pit RoadCall Vern Barrett at (204) 694-1779 or Brett Mitchell at (20) 482-8608 to reserve your spot in the HD Quad Adventure. Register before March 15/09 and you could win a family getaway
Vernon Run to Finish Huntingtons
Vernon Run to Finish Huntingtons
4/19/2009
4/19/2009
8:30AM
Kin Beach Park, Vernon, BC
1KM or 5KM8:30am- Registration10:00am- Runners10:05am- WalkersA registration fee is required but will be waived with more than $100 in donations raised. Door prizes and refreshmentsFor more information please contact Dan Middleton at (250) 766-5527
Westside Knuckleheads HD Quad Adventure
4/19/2009
4/19/2009
9:00AM
4/19/2009
4/19/2009
8:30AM
Kin Beach Park, Vernon, BC
1KM or 5KM8:30am- Registration10:00am- Runners10:05am- WalkersA registration fee is required but will be waived with more than $100 in donations raised. Door prizes and refreshmentsFor more information please contact Dan Middleton at (250) 766-5527
Westside Knuckleheads HD Quad Adventure
4/19/2009
4/19/2009
9:00AM
CYMER Shoot to Cure HD
CYMER Shoot to Cure HD
Friday, June 5, 2009
6:00pm -10:00pm
At Chargers Park
Mark your calendar for the 8th Annual CYMER Shoot to Cure HD.
This fun-filled, star-studded event is one of the best and most unique parties of the year, and includes a wild speed free-throw shooting contest that you have to see to believe. Join some of your favorite Chargers while sampling some of San Diego's finest food and libations.
And, most important, you will be making a difference in the fight to stop Huntington's Disease.
Free food & drinks from San Diego's favorite restaurants
Enjoy a one-of-a-kind speed free throw contest
Live music
Incredible prizes and silent auction items
Tour Chargers Park
Help find a cure for HD
For more information, contact Natalie Carpenter at 619-225-2255.
Shoot Honorary Chair
Antonio Gates
Black Eye
Lucky was sick. He could not have a bowel movement. He had no energy. He tried to get it out yesterday. It looked like he was in pain. We called Trevor’s Dad. His dog Abbey had the same problem. Today he is better. He let out five poos today. I am getting so sick. Last night I was eating with Trevor, my hand was shaking like crazy. I also got a black eye. I had a bad fall. Hit the counter. I almost used life alert. Trevor was almost in tears when he saw how bad my chorea has gotten in my hands. He does not want to lose me. He told me he never regrets marrying me. I reminded him about the stem cells that Don got us. He is going to call soon and get info. Trevor takes this worse than I do. I told him we can grow old together. I really believe it. The stem cells will help us get there. This week he works late. My balance is very bad today. Never lose faith in the future. Never lose faith in yourself. You can fight this. We are all strong people. We can fight. Every day is a fight worth winning. Fight for every smile. Fight to live your life. It is yours. Don’t give back your life. Take it back. Take it away from HD. Don’t lose hope in the fight. We will win in the end. We will get cured. We will have a life, free of HD. We deserve that. We are too good of people to let us die. We will live on. Just fight with me. Have hope with me.
5th annual hd fundraiser april 25th 2009
5th annual hd fundraiser april 25th 2009 from 9a-2p at riverside rest home 276 county farm road, dover n.h. 03820
we have baked goods, raffles, the news paper usally sends someone out and it goes in the paper.
we also do the apple harvest in downtown dover in april we set up a table of info on hd to hand out to the public.
i also do a support group the 2nd tuesday of the month, at wentworth douglas hospital in dover n.h.
call charlene at 603-742-2996.for more info.
we help with a walk-a-thon in september in durham n.h. also
we have baked goods, raffles, the news paper usally sends someone out and it goes in the paper.
we also do the apple harvest in downtown dover in april we set up a table of info on hd to hand out to the public.
i also do a support group the 2nd tuesday of the month, at wentworth douglas hospital in dover n.h.
call charlene at 603-742-2996.for more info.
we help with a walk-a-thon in september in durham n.h. also
Thursday, March 19, 2009
wearehd.org site Leader
I am finally officially a wearehd.org site leader. I have every day tasks to do. I will keep busy doing both. Everyone needs to join. It is a good supportive place. I have been there since the inception. It is a place where anyone can go. Share, grow, learn. I put up a lot my info I got here for them too. I also welcome you if you join. I am so excited to be finally recongized. I love that place.
Trevor is Healthy
I have been falling and hurting myself for the past week. I am getting hurt a lot. Smacking my head into things. The past two days my HD is bad again. I was irrational today. I have been depressed, angry too. I am wondering if my meds need a check. The worst part of HD is the mental for me. I love my WII. My balance is improving. My age is down to 50. They use them in the Nursing homes here. It works for them too. The only thing I am worried about is I am less than 111lbs now. I am going to up my ensure. I have went down to twice a week. Trevor’s blood pressure is normal. We have been eating an ultra healthy diet for him. We think that might be it. His ACE Inhibiters worked miracles. I am excited for stem cells. I can grow old with Trevor. Everyone in this town is praying for us and trying to help us. Don does not want to see a young girl die. He did so well for us. Next week Trevor will call. He did not want to tell me. He was not sure if I was into stems cells, since they were illegal in the states. Until Obama fixed it. I got another hate email from a person that thought we were all going to die. I fight for you guys. I fight to bring hope. I won’t stop, as much as they want me too. I know it is right. I will be incapacitated and still helping you guys. They don’t stop me. They make us stronger. Let’s not pay attention to death. Only too life. Too hope. That’s why you come. No death here. We don’t want that world. Let’s live together.
Team HOPE
Team HOPE will be conducting walks throughout the country this fall in an effort to raise awareness and money for HD. If you'd like to get more information please email me at wiley4hd@gmail. com.
The following are cities we will already be in. Dates and times are still being finalized. If you are interested in starting a walk in a different city let us know.
You can also Facebook us at Walk4hd.Atlanta, GA Philadelphia, PA Wilmington, DE Washington DC Cleveland, OH Fox Valley, WI New Orleans, LA Baton Rouge, LA Lafayette, LA Seattle, WA Dallas, TX Houston, TX San Antonio, TX NYC, NY Long Island, NY Middletown, NY Orange County, CA Los Angeles, CA Phoenix, AZ Tucson, AZ San Francisco, CA Fresno, CA Sacramento, CA Akron, OH Madison,
Thanks for your time. Together we can make a difference.
How To Get Promising Therapies To Those With HD Sooner
Here's a few of my thoughts, from on a person with HD's perspective on "How To Get Promising Therapies To Those With HD Sooner. How do you find out quicker if potential therapies really work for HD? Howdo you eliminate bad potential therapies as fast as possible so you can moveon to testing other potential therapies, thus only spending the majority ofthe time on the most promising therapies? Once a potential therapy is foundfor HD, how do you get it to everyone as quickly as possible?
Cycle time reduction is the smartest and most efficient way! As a leanmanufacturing expert while working at the AlliedSignal Automotive and Aerospace Divisions I utilized this technique daily to drive more money tothe bottom line, decrease inventories, quadruple production output, increasemanufacturing throughput and ultimately increase the company's Return OnInvestment (ROI)- all without spending lots of extra money! We called it working smarter, not harder! However, in our current clinical researcharena this is a very hard paradigm to break. If you're a researcher, whyrush on clinical trials, and it gives you and your staff plenty of breathingroom to begin advertizing, recruiting and ultimately examining participantsfor the research study you're conducting. However, if you happen to be theone dying of HD, extra time is something we don't have much of and maybeit's time to demand that the old "paradigms" and "normal" time standards forclinical trials be drastically reduced!
The very successful fMRI studyconducted 8 months ago by UCSD at San Diego was extremely successful inreducing cycle times. The entire study was fully enrolled (includingcontrol subjects) and all necessary testing completed in just 4 shortmonths!! It was a priviledge working with Jody Goldstein at USCD toaccomplish this herculean effort! She is truly committed to reducing cycletimes to get test results sooner! Imagine a world where you can fill clinical research studies within days orweeks instead of months and finish them sooner than the existing ones!Imagine having participants who are not afraid to participate in ANY newresearch study because they know their time commitment will be minimal, notfive years as with one of our current studies. I seriously doubt if thisstudy will ever be filled and I can also guarantee you that once somethingmore promising comes out, people are going to bail out of this particularstudy and into that new one to glean a little hope sooner. In order to effectively reduce cycle times in clinical research studies,more information has got to be know about the available participant pool soonly ones that "pre-qualify" can be contacted. We did that recently here inArizona. We already knew who was gene positive but still asymptomatic sospecific e-mails and phone calls could be made to only these individuals.Really knowing the sheep in your flock allowed me to compile the type ofinformation on them that also allowed Jody at UCSD to identify, match andselect closer "control" participants. Information was shared on everyonewho was attending from Arizona so appropriate "controls" could be selectedimmediately, eliminating the need to wait until the last minute.
This Functional MRI (fMRI)) clinical research study sponsored by CHDI.Because of its uniqueness, additional information had to be concatenated onpotential participants- those who were left handed could not be used astheir brains functioned differently than right-handers and would "cloud" theresults. In addition, sex and education were also critical so "controls"could be matched more precisely. Because I had been over the ArizonaAffiliate for the last seven years I knew everyone here very well and hadalready established a friendships with everyone which made the collection ofadditional information needed as simple of making a few phone calls. Whatare your limiting factors to reducing cycle time?
www.hdtrials.org article
I've read with great interest the recent passionate pleas from members ofour HD community for everyone to get involved with clinical trials. Seemslike lists of potential participants would have been prepared years ago inanticipation of what was going to be needed in the future by theorganization who had the most knowledge about what was coming down thepipeline and what new needs and resources increasing clinical trials wouldhave in the future- more leadership and preparation than putting up thepassive http://www.hdtrials.org/ website (which still hasn't been widely advertised)and expecting everyone to stumble on it and register! Had we had moreinspiration and leadership then, we would already be better prepared TODAYto actively enroll everyone in appropriate clinical research studies!Encouraging everyone to participate today is good- it's only about two tothree years too late in my opinion! I developed a forward-looking plan several years ago that recommended thatwe immediately begin focusing on identifying, "befriending," helping andrecruiting the largest pool of potential clinical trial participantsavailable- those who are at-risk! I was scoffed at and ridiculed.Visualize in your mind a picture of a huge iceberg: those already diagnosedwith HD represent the small tip of the iceberg (that is visible to the nakedeye)! However, the group represented by the largest part of the iceberg-the part underwater, is the very large number of individuals who areat-risk! They represent, by far, the biggest or "bulk" of the iceberg! The current Center's of Excellence (COE's) are okay but they are too littletoo late and are geared primarily for those who are already symptomatic. Myplan was to establish COE's who would also be caring for those who wereat-risk, before they get fired, divorced, arrested for embezzling, etc. Ithink you see my point. It doesn't take much insight to realize that thevast majority of our "potential" research participants for current as wellas future clinical trials are going to come from this untapped naturalresource called the "at-risk group" whom we still know relatively nothingabout! I know that here in Arizona, I know most of those who are in thisgroup. I also know who is at-risk and showing symptoms, gene positive butnot symptomatic, gene positive and a little symptomatic, etc., etc. I hopeyou can see my point. Who is putting on the mantel to become the inspiredleaders we need today to organize such an effort? A few groups and organization around the country know a lot about the sheep in their folds,but the majority still don't!
Wednesday, March 18, 2009
Getting Cured
I can’t believe our landlord do this. He is in Mexico getting dentures; he thought of me and checked out an excellent stem cell research center in Uma, Mex. He talked to the patients to see how it was. It was really busy. He ran into people there that got HD and got Stem Cells. They said they worked miracles. He asked all of patients there. I knew one person sent me an email about it. It took away all of the damage from ten years of HD. Trevor will call and get more info. I have phone numbers and info here. He thought it is the best in Mexico.
Los Algodones
Dr. Ross
MEX #1= 0152-055-177-7783
MEX #2=0152-658-8177252
American#1=0152-377-4575
American#2=0152-920-3408
Tuesday, March 17, 2009
Tribute to Glen
Someone else died today. One of my Special buddies Glen. He got Pneumonia and he could not fight. He was one of my team mates. I am finding out when his funeral is. I am so sick of people dying around me like flies. I called my Dad to cheer me up. So much death. He was an amazing bowler. He was a cripple with a crippled arm, he bowled better than anyone else. I was inspired by what he could do. He always smiled and was a sweet, happy man. We were all in shocked. There is not a single person who could not love him. He just could not fight anymore. He will be severely missed by all of his Special friends.
Dad got us in the Creatine trial
Hi Mary Lou: My son Gary and my daughter Heather Dugdale have been waiting for info on the start of the Creatine Trials, as they both want to participate in them. We were wondering if you had any info on when the trials might possibly be starting, as we were told in November 2008, that it would probably be a couple of months, and we had not heard anything as yet.
Hi Wayne, We will be starting as soon as we have Ethics approval, probably in about a month. We'll be in touch
Mary Lou Nicolson Klimek,RN,MA
University of Calgary
Clinical Neurosciences
Area 3, Health Sciences Centre
3350 Hospital Dr. NW
Calgary AB T2N 4N1
T. (403) 210-8548
F. (403) 944-4063
klimek@ucalgary.ca
University of Calgary
Clinical Neurosciences
Area 3, Health Sciences Centre
3350 Hospital Dr. NW
Calgary AB T2N 4N1
T. (403) 210-8548
F. (403) 944-4063
klimek@ucalgary.ca
Monday, March 16, 2009
Molly's funeral
Molly had a nice funeral. A lot of people came to see her. She had a lot of friends here. All week we had family dinners. Last night we had a Pot Luck dinner at our place. Trevor’s whole family is down and we have not seen them since our wedding. They love our new condo. They got the tour. Got to meet Lucky. We are now welcome to go stay in Kelowna with his Uncle Gary. My Dad had a hard time getting a WIIFIT for me. They are hard to get. I love mine. It does tests to see how you are. Weight, Body Mass, actual age. After five minutes it figured out I had balance issues. They want me to do strength training and balance exercises. Every day it checks to see if I am meeting my goals. I am really 54 years old. I am 111 lbs. Everyone thinks I still look healthy. Not scary skinny. Though I was worried. I believe this will work. Phsyo they could do nothing. I have had 2 HD free days. I did cleaning like crazy yesterday. I joke about my age. I tell Trevor’s family that I am older then they are. I don’t want to make it painful. Laugh and enjoy life. Enjoy what you have. Enjoy what you don’t. Make your life worth fighting for. Make it work. Make it fun. Strive to be the best you can. You have the power to change your life. You are the one that can change that. Get your life. Take it back.
Saturday, March 14, 2009
Friday, March 13, 2009
Molly’s funeral
My Dad gave me a WII. He also gave me a WIIFIT. I get bowling too. He gave me games too. I am so excited. I have wanted one for awhile. I know they use them in REHAB’s in hospitals. My Dad sent me this is a birthday present. I am tuning 26 on the 29th. I have had HD for three years now. I will tell you how this works. The appointment with my Occupational Therapist went well. Tomorrow is Molly’s funeral. I am going to miss my Special Buddy. I do have an infection. DR. Walker gave me antiboitics again. Today all of Trevor’s family had a meal at his Grandpas. We have done it twice. We are having them, over for pot luck after Molly’s funeral. Poor Alice has to work at the Nursing home where she died.
Thursday, March 12, 2009
Missing Molly
My Occupational therapist. Amy is coming tomorrow at 11:00 for an assessment. Molly’s Memorial is this Saturday. I miss her. We drive pass Swan Valley and cry. Sometimes I think I need to keep her company. Trevor’s Grandpa is sad and lonely, since Molly passed. Everyone misses her. At the Gleaner’s they are moving toys. We did not go. Next week, they will all be in the new section. Tomorrow I get to go see the Doctor and find out what infection I got. They are cutting back everyone that works Trevor’s job. They are running out for work. One of our new fiends here will take me out for rides if I need some. We meet more neighbors today. Everyone is nice here. Forgive yourself. This is HD. We aren’t responsible for acting crazy. Accept us . Don’t forget, we are people. I know Trevor will ever forget the me, if I get sicker. We are human. We have feelings. They can get broken.
Canyons to Cactus 2009
It hardly seems possible, but it's time to announce our long distance bicycle ride for HD - this year's title will be "Canyons to Cactus 2009." Once again, Charlotte Reicks and I will be "on the trail to a cure." It will just be the two of us, since our other riders (Sherri Kole and Sandy Lozier) had other family commitments this year. We would welcome any guest riders. The scenery will be spectacular!
The ride dates are May 17 - June 4, 2008. We will start from Grand Junction CO (where we live) and ride to Phoenix AZ, through parts of four states (Colorado, Utah, New Mexico, and Arizona.). We will be in some familiar territory in Arizona, along part of Route 66 and towards the end of the ride. This will be our itinerary. Day 1 - May 17 - Grand Junction CO to Gateway CODay 2 - May 18 - Gateway CO to Redvale CODay 3 - May 19 - Redvale CO to Dove Creek CODay 4 - May 20 - Dove Creek CO to Cortez CODay 5 - May 21 - Rest Day - Tour Mesa Verde National ParkDay 6 - May 22 - Cortez CO to Shiprock NM (via the Four Corners)Day 7 - May 23 - Shiprock NM to Navajo NMDay 8 - May 24 - Rest Day - Tour Navajo Rez, including Window Rock and Canyon de ChellyDay 9 - May 25 - Navajo NM to Chambers AZDay 10 - May 26 - Chambers AZ to Holbrook AZDay 11 - May 27 - Holbrook AZ to Heber AZDay 12 - May 28 - Heber AZ to Payson AZDay 13 - May 29 - Rest Day - Charlotte flies to Iowa for her granddaughter's college graduation, Marie tours PaysonDay 14 - May 30 - Rest DayDay 15 - May 31 - Rest Day - Charlotte returns from Iowa; we drive to Sedona AZDay 16 - June 1 - Sedona AZ to Prescott AZDay 17 - June 2 - Prescott AZ to Wickenburg AZDay 18 - June 3 - Wickenburg AZ - Scottsdale AZDay 19 - June 4 - Scottsdale AZ to Phoenix AZ, arrive at Hyatt Regency Hotel. If anyone knows someone in any of these towns who might host us overnight, e-mail me privately.
Our goal this year is to raise $47,000 for family services and research, so that we can reach a grand total of $500,000 by the end of this year's ride. This year, after $6 million is raised by HDSA, donations will be matched $1:$1. Any amount of donation is greatly appreciated. Let's try to get donors from ALL 50 states and some other countries too, like Canada, Sprain, England, and Australia! Donations should be sent to: Marie Nemecc/o Canyons to Cactus 20093087 - A 1/2 RoadGrand Junction CO 81503 T-shirt Sponsorships are $65 for individuals, $125 for businesses. Consider honoring the memory of a loved one, or having your name on the limited edition ride T-shirt. With any sponsorship postmarked by April 15, a "free" T-shirt is included. Make sponsorship checks payable to "HDSA." Indicate long or short sleeved, and T-shirt size. The ride brochure for the bulk mailing went out last Wednesday, March 4, so if you're a prior ride donor, start looking for its arrival within the next week. Those "newbies" to the Hunt-Dis List who are not familiar with our "Bike For The Cure" rides, go to www.bikeforthecure.org. The website for this year should be ready later this month. You can also go to our giving site www.firstgiving.com/bikeforcure to read more about past rides and to donate. Any questions? Email me at bikenquilt@hughes.net or rmnemec@hughes.net
Wednesday, March 11, 2009
To Bed Early
I have my infection. It might be strep throat or something. I was in tons of pain and took an Advil. I see DR. Walker on Friday to find out what it is.
Tuesday, March 10, 2009
Bowling
Today has been a great day. I did amazing at bowling. I got my first strike, three spares. I got over a hundred on every game. On Thursday I got Gerry set up to give me a ride home, and from the Gleaner’s. She is a good friend and also runs Special Olympics. Bocci and Tee Ball are starting up in April. I will be doing all of those too. I can’t wait. Today I was really sick again. I was healthy in the morning and then later on got sicker. I also have a cold now too. Accept HD. It is the only way to live. The shadows are not where we want to be. We want to be happy and free. You have to fight the fear inside. That is all it is, fear. We can calm it. We got the cure for that fear. That is the strength inside. We all have it. We are capable of great feats. We just have to try. Try and win. Try and come with me. Win the fight. Be happy. It is hard. In the end it would be great. Fight and live. Fight and smile. Fight for your life. It is what you make of it. Win. Fight. It is always worth it to fight for what you want. You want life, get it.
Monday, March 9, 2009
Run for HD
Run for HD
6/28/2009
6/28/2009
8:30AM
Sunnybrook Park, Toronto, ON
5k fun run and 1k/5k walk
6/28/2009
6/28/2009
8:30AM
Sunnybrook Park, Toronto, ON
5k fun run and 1k/5k walk
When: Sunday, June 14th, 2009.
Where: Sunnybrook Park, Toronto (near Leslie Street and Eglinton Avenue East, not far from DVP/404 and 401 highways)
Schedule: 8:30-9:30am arrival 9:50 opening ceremonies and warm-up 10:00 5k run start 10:05 1k and 5k walk start 11:30 announcements and prize draw
Join us for a walk in the park or a fun run. Many volunteer opportunities.
To register please go to http://www.events.runningroom.com/site/?raceId=4227
Contact: Tim Irwin 647-238-6294 or run@hdtoronto.org Stay tuned for more details!
Support a great cause and save big with the Entertainment® Book! A portion of your purchase will go to support
Support a great cause and save big with the Entertainment® Book! A portion of your purchase will go to support HUNTINGTON SOCIETY !
http://www.entertainment.com/discount/?groupID=749579
http://www.entertainment.com/discount/?groupID=749579
Lucky
We are making lots of friends here. The neighbors are all nice. Lucky loves this place. More room to run around. It is a nice condo. We still can’t believe we got this. I am getting all lot sicker. I really have trouble eating, walking, chorea is bad. My brain fog is getting worse too. I can’t remember anything. I also am getting stuck in trances. My Special Friend’s memorial is on Sat. We miss her so much. Learn to live. Live to learn. Learn about how to move on. Life is for living. Live your life. Love your life. All we get. Live for yourself. You deserve to be happy. Fight to be happy. Fight for your smiles. Fighting, you can win. Fight HD away. Let the laughter fill your lungs. Let life fill your lungs. Gray is coming down this summer. Trevor ahs a Special Surprise for me on my birthday, March 29th.
AMPAKINE treatment may bring favorable results to patients suffering from Huntington's disease
AMPAKINE treatment may bring favorable results to patients suffering from Huntington's disease.
Mito HD
There is a Huntington’s Disease Study actively recruiting participants in your area. It is called Mito HD. The following is a brief description of the study, the qualifications needed to participate, and contact information to learn more or to volunteer to partiipate in the study.
Mito HD SummaryStudy Purpose: To learn more about how energy is used in individuals with Huntington’s. These results will help researchers develop tests that can be used to tell us whether a medication is working to improve energy in HD.
Location: University of Texas Southwestern Medical Center, Dallas TexasParticipants Needed: 30 individuals with early stage HD, and 30 individuals without HD. You will be asked for more information by phone interview. You may be excluded if taking certain medications or supplements.
Trial Duration: Four to six hours in the exercise room (only brief periods of exercise), and two weeks of wearing an arm band (which can be returned by mail).
Testing Procedure:1. After a special breakfast, an intravenous (IV) catheter will be placed so that only 1 needle stick is needed for multiple blood tests during the study.
2. You will perform 2 types of exercise: repeatedly squeezing a hand-held device for 6-7 minutes and pedaling a stationary bicycle for 5 to 20 minutes. Portions of the testing may be strenuous, but you will be constantly supervised.
3. You will briefly (about 20 seconds) breathe into a tube to collect air for study. For more details please call one of the following people and let them know you’re interested in participating in MITO-HD. Please tell them you heard about MITO-HD from HDTrials.org In Texas: Christine Hunter 713 798 3951 chunter@bcm.edu In North Carolina: Christine O’Neill 336 716-8611 coneill@wfubmc.eduYour participation in clinical studies and clinical trials will help accelerate the process of finding therapies and a cure for Huntington’s Disease. If you know someone else who may be interested in participating in this study please forward this email to them, and encourage them to register with HDTrials.org for future notices.
Mito HD SummaryStudy Purpose: To learn more about how energy is used in individuals with Huntington’s. These results will help researchers develop tests that can be used to tell us whether a medication is working to improve energy in HD.
Location: University of Texas Southwestern Medical Center, Dallas TexasParticipants Needed: 30 individuals with early stage HD, and 30 individuals without HD. You will be asked for more information by phone interview. You may be excluded if taking certain medications or supplements.
Trial Duration: Four to six hours in the exercise room (only brief periods of exercise), and two weeks of wearing an arm band (which can be returned by mail).
Testing Procedure:1. After a special breakfast, an intravenous (IV) catheter will be placed so that only 1 needle stick is needed for multiple blood tests during the study.
2. You will perform 2 types of exercise: repeatedly squeezing a hand-held device for 6-7 minutes and pedaling a stationary bicycle for 5 to 20 minutes. Portions of the testing may be strenuous, but you will be constantly supervised.
3. You will briefly (about 20 seconds) breathe into a tube to collect air for study. For more details please call one of the following people and let them know you’re interested in participating in MITO-HD. Please tell them you heard about MITO-HD from HDTrials.org In Texas: Christine Hunter 713 798 3951 chunter@bcm.edu In North Carolina: Christine O’Neill 336 716-8611 coneill@wfubmc.eduYour participation in clinical studies and clinical trials will help accelerate the process of finding therapies and a cure for Huntington’s Disease. If you know someone else who may be interested in participating in this study please forward this email to them, and encourage them to register with HDTrials.org for future notices.
Sunday, March 8, 2009
Registry Data Collection and Retention
The rate of enrolment into REGISTRY over the past year has increased by one third, with a total of 4,282 participants registered on the web portal. As the REGISTRY cohort continues to expand, study sites are encouraged to balance their efforts between recruitment and retention to ensure that the collection of high-quality data is sustained at its current volume.The contribution of sites and participants involved in REGISTRY continues to be remarkable, and provides EHDN with a robust clinical and biological repository that will serve to expedite our understanding of this disease. We would like to take this opportunity to encourage EHDN members to apply for access to the REGISTRY database for research proposals. Please visit http://www.euro-hd.net/html/projects/proposals forfurther information.
Predict-HD studyJane S. Paulsen et al., J. Neurol. Neurosurg. Psychiatry
Predict-HD studyJane S. Paulsen et al., J. Neurol. Neurosurg. Psychiatry (2008), 79:874-880This study shows that small changes in clinical and neuroimaging parameters are detectable long before the predicted onset of Huntington's disease, and proposes a model establishing the relationship between different clinical outcomes and estimated age at diagnosis.The relationships between estimated years to diagnosis and motor scores, striatal volume, odour retention and cognitive measures were strikingly consistent. Understanding the initial steps in HD pathogenesis could facilitate early clinical diagnosis, and improve trials of candidate drugs aimed at delaying disease onset or slowing the rate of disease progression.
A comparison of Huntington disease and Huntington diseaselike 2
A comparison of Huntington disease and Huntington diseaselike 2 neuropathologyDobrila D. Rudnicki et al., J. Neuropathol. Exp. Neurol. (2008), 67:366-374In recent years, a number of neurological disorders have been identified where patients present with a clinical picture similar to that seen in Huntington's disease (HD). To date, four "Huntington' s disease-like" (HDL) syndromes have been recognised. This study compared post mortem brains from Huntington's disease and Huntington's disease-like 2 patients. Neuropathological features of both diseases were very similar, suggesting that the pathogenic mechanisms underlying the two diseases might overlap.
Weight loss in Huntington disease increases with higher CAG repeat number
Weight loss in Huntington disease increases with higher CAG repeat number N. Ahmad Aziz et al., Neurology (2008), 71:1506-1513This study shows that the rate of weight loss in Huntington's disease is directly proportional to the length of the CAG repeat in the HD gene, and is likely to result from a hypermetabolic state. Participants (517 early stage HD patients) were recruited from the European Huntington's Disease Initiative, a phase III interventional clinical trial.Detection of Huntington's disease decades before diagnosis.
Friday, March 6, 2009
Molly's Dead
Today, sadly Molly passed on. We have no idea when the funeral is. We planned to go to Cranbrook. We thought she would not want us to be down. I will always miss my special buddy. My dementia is getting worse. My chorea is getting bad too. I am having problems eating, and spill on everything. Someone next door dog sat for us. We have a nice condo. What is sad, I wanted to have my special buddy come first. I will never forget my Molly. Never stop loving you.
Thursday, March 5, 2009
One for Me, One for HD campaign
Thank you to the energetic and passionate Canadians who have shared their hopes and dreams for 2009 in our One for Me, One for HD campaign. And a tremendous thanks to the caring people who made a gift to our cause! We’re connecting with you to encourage you to get involved in our campaign and make your own special gift today!
Each and every goal is inspiring – and when I’m reading the goals that have been entered at www.oneforhd.ca, I imagine each person setting their thoughtful goals, and I am reminded of the strength and courage of our HD community. And each and every gift ignites hope and confidence – your gift is put into action in your community and across Canada.
Taken together, these goals embody our shared vision: a world free from Huntington’s. Only through personal action will we enrich our own lives and the lives of others. What a powerful force for change we can be!
Please take a moment right now to participate in our campaign and make a gift to the fight against HD. Your gift ensures we are funding the most promising research into a treatment or cure, and provides critical support to families confronting HD every single day.
Every dollar you give will be increased by 35% from one of our generous supporters. Now is the time to give to our cause and make your gift go even further!
Get inspired and inspire others today! Please, participate in our One for Me, One for HD campaign and give today!
Yours for a world free from HD,
Each and every goal is inspiring – and when I’m reading the goals that have been entered at www.oneforhd.ca, I imagine each person setting their thoughtful goals, and I am reminded of the strength and courage of our HD community. And each and every gift ignites hope and confidence – your gift is put into action in your community and across Canada.
Taken together, these goals embody our shared vision: a world free from Huntington’s. Only through personal action will we enrich our own lives and the lives of others. What a powerful force for change we can be!
Please take a moment right now to participate in our campaign and make a gift to the fight against HD. Your gift ensures we are funding the most promising research into a treatment or cure, and provides critical support to families confronting HD every single day.
Every dollar you give will be increased by 35% from one of our generous supporters. Now is the time to give to our cause and make your gift go even further!
Get inspired and inspire others today! Please, participate in our One for Me, One for HD campaign and give today!
Yours for a world free from HD,
Moving
Our condo is so nice. We have had Trevor’s family down here they loved it. Trevor says he grieves for me everyday, for all of the things I can't do.They are down to see Molly. It is huge. Wheel chair accessible everything, even the patio. We meet a lot of neighbors and they are all really nice here. I know some of the older ones did not want young people moving. Our Landlord told them that young people need help. One of the Neighbors told us that. They took us on the dog path. It is a nice off leash walk. There all sorts of animals there. Lucky and Margret’s dog loved it. We have been going out for walks. I am happy. No more stairs ever. Those were horrible. This place is all space too. Less room to fall. We feel so blessed to have this. Trevor is starting his own Computer repair business. I have a huge walk in closet here too. I am going to do my first Relay For Life on July 7th. I will have a candle for little Kaiden. I am excited. I am going to be on my home support Nurse’s Shirley’s team. It took a while to get the net. They had a huge error in Creston. We all lost it yesterday. This is our year. This is your year. Live it. Learn form life. Life shows us the way. The chosen path. The way to go. Life shows us that. On Saturday Trevor and I go to Cranbrook. We are going to have dinner and a movie.
Molly's Dying
I got a sad and happy blogs today. I will start with the unhappy one. When I went to see Molly on last Sat, she was happy, healthy. On last Thursday she passed out. They took her to the hospital here. She has Gallstones and they ruptured her bladder. They are very painful for her. She is on tons of Morphine and is in a lot of pain. She was there for three days. She is now in palliative care in the nursing home. She is not eating. Not taking a tube. Every day we can Trevor and I are there. Alice came out of Mexico early to be there. Any day she could die. I don’t want to lose my Special buddy. We are all trying to prepare for it. I will forever remember the good times we had. We had tons of good times together. You can't ever prepare for it. I will enver forget my Molly.
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