Trevor is in Nursing School in Jan 4th

He got all his hours at Swan Valley down, with me. We are both, going in there together again. Trevor and I love the patients We both choose Sun Downing, as the time we volunteered. They loved Trevor and Trevor loved them. We were waiting for the funding. He needed an endorased quit. It is where you switch a job that pays low, too on that is higher. They pay for his education and let him get EI payments. They are 60 percent of your wage. Trevor wants to become a Home Care Aide. He wants to learn, how to look after me and he wants to make sure, I never go in a home.

The Huntington Society of Canada is URGENTLY needing your input in to the development of a program for children are in families li

The Huntington Society of Canada is URGENTLY needing your input in to the development of a program for children are in families living with HD.

Below you will find links to two short surveys (approximately 5 minutes in length).
• HD Adults – for those who are over 18, and have been a child in a family living with HD (gene positive, gene negative or at risk) (link below)

https://www.surveymonkey.com/s.aspx?sm=jrQltF3Tc9AnAVtWZR_2fJlA_3d_3d•

HD Families – for parents who are currently raising children in a family living with HD (gene positive, gene negative or at risk, living with HD, spouse/partner, and others) (link below)

https://www.surveymonkey.com/s.aspx?sm=4SlrdQhKFZ6mwcY5eQ_2fsdg_3d_3d
We recognize that some people may feel it is appropriate to answer both surveys as they are both a parent and an adult who has experience in being in a family living with HD and you are welcome to complete both. We will be continuing to accept responses until December 4, 2009.

Thank you for your participation!

Love my Dad

My Dad is all of our major Support. My Dad, never left my Mom, until she died. He is now looking after Gary. I wanted a man, like my Dad, someone who would stick through, it all. He pays for my website. He knows how important it is. for me and other's. All websites cost money. He bought me extra space, when I ran out. When I first started, doing web design, when I was 14, everything was free. Now, it is a money grab.

Updates

I updated My Story

Veggie again

I started being a vegetarian, when I got to be 16. I grew up on a cattle farm. My Grandparents, skinned fish, chicken's and ducks. They also hunted. I saw them as, my friends. I fed and looked after the chickens and ducks. They were my pets and they were being slaughtered. When I got sick and found out I had HD, my Maid of Honor's family took me in. They bought my groceries and it made me feel worse. I started eating meat to make it easier for them. Now, that I am with Trevor and married, I can turn veggie again. Trevor is a meaty guy. We aren't using someone for food. He loves his meat. I just love animals so much.

Tai chi: Discover the many possible health benefits

Tai chi: Discover the many possible health benefits
The ancient art of tai chi uses gentle flowing movements to reduce the stress of today's busy lifestyles and improve health. Find out how to get started.

http://www.mayoclinic.com/health/tai-chi/SA00087

Herbal supplements: What to know before you buy

Herbal supplements: What to know before you buy
Herbal supplements aren't right for everyone. Get the facts before you buy.

http://www.mayoclinic.com/health/herbal-supplements/SA00044

Dietary fiber: Essential for a healthy diet

Dietary fiber: Essential for a healthy diet
Dietary fiber offers many health benefits. Here's how to include more in your diet.

http://www.mayoclinic.com/health/fiber/NU00033

In the honor of my Cancer family

I support both causes, since HD and Cancer run into my family. We had two of my family die from both.

My Mom and Aunt- HD

My baby cousin Cadian and my Grandma-Cancer

Dear Heather,
We have all been touched by cancer in our lives. The face of cancer is a child, a grandparent, an uncle or a friend. This holiday, help us tell a story of hope – we are fighting hard and effectively to prevent and eradicate cancer.

You can join us this holiday season by choosing gifts with meaning and relevance from our new gift catalogue Wish List: Hope Renewed.

Give a gift of meaning and help grant the biggest wish of all: a world without cancer.
Sincerely,Barbara KaminskyChief Executive OfficerCanadian Cancer Society, BC & Yukon DivisionP.S. Visit the online catalogue at www.cancer.ca/bc/wishlist now and order your gifts today! Every gift you give brings us one step closer to a world where no man, woman or child has to fear cancer.

Me and Trevor at the Demintia Ward

Trevor is going to be a home care aide. He wants to learn how to look after me. He also, wants to keep me out of a home. He is doing volunteer at the Dementia ward, I am back working at. We both chose it, no one wants to volunteer there. They all know Alice, Trevor's Mom and Dad. I worked with Alice. Trevor needs to finish, his hours by Dec 1. He has to get funding for the course. We are back, because of Jack, telling us that it is crazy in there. I came in to today with Trevor. He was doing recreation. I worked, with a Nurse called Kerry, when I looked after Molly. She was my reference, when we got these condos. She gave me one of the hardest patients, Elouise. She was a walker. She walked, me for hours! She is a machine! I will be going back, on Sunday at anytime. At Swan Valley, you can make your hours. I want to help, the people that society, does not want. I am doing this for my Grandma and Trevor's Grandma too. I started into the dementia ward to look after my Grandma. Trevor will make a good Nurse. He loves his patients and is good to them.

Happy Thanksgiving American Friends

Faith and Hope Society

I added the Faith and Hope Society to my links.

Meds not working

I am having bad dementia. I forgot to talk about my meds not working. I was fighting depression and up and down moods. Today, I start my new meds. They upped my anti depressant. They were worried about upping them. My body can't take anymore. My Mom was in the hospital, hallucinating, when she got more meds, then she needed. My Dad, was worried, about me being on a lot of meds. I have been in horrible HD pain and uncomfortable pain again. Once again, I was up all night, I could not sleep. I was kicking in bed. I also get in the day now. I feel like freaking out. I just want to kick. I have a hard time typing. I feel the same thing, in my arms too. Accept HD. I have to accept it. This is the real HD. This is our life. We have to deal with it. Live with. try our best, to fight. Fight, with me. Don't ever give up. Fight every second, it all counts. Strength is found in our souls. We are stronger, then we think. Use, that strength, to fight HD.

Subject: NY Congressional District #19

Subject: NY Congressional District #19

Got this from HUNT-DIS

From: revjimbridges@GMAIL.COM

Is there anyone else on this list from John Hall's District? If so, and you are interested in meeting with him or his staff re sponsoring HR 678, pleasecontact me off list so we can co-ordinate our efforts.

Genetic Testing Reveals Devastating Illness

Did you hear the NPR story this morning about the NBC correspondent who has Huntington's? I'm going to get in touch with him because he could be a great contact for us to have....at the very least, a consultant of sorts.

He's a kindred spirit for you as another HD sufferer, and for me as a member of the tv news 'tribe'.

http://www.npr.org/templates/story/story.php?storyId=120610850

2nd Time on TOP Chronic Disease Blogs list again

I am featured again. It is really hard to get on these blog lists. I love helping people deal with HD, that is why I started this blog. We all need hope. We all need to know, that everything is going to be alright. I am glad to get my message out. As sick as I get, I will never quit giving you hope. My typing is a little bit of a problem now. I will be on my death bed and still blogging. I will never give up, neither should you. Fight with me.

Support "Making a Dream Reality........CURE Juvenile Huntington's Disease!"

This is run by o0ne of my WEAREHD.org friends. I told her how to go about having an HD event, since I learnd how to do it Calgary.

It's not too late to sign up to help support "Making a Dream Reality........CURE Juvenile Huntington's Disease!" a fun time and fund raiser put on Marvelous Mukka Sisters!!!

For information or reservations, contact Erica Mukka at 906-524-2388 or

Bonny Cotter at 906-395-0461.

If you live within driving distance.......please try to come out and support this wonderful event.

Glow Bowling only $10 for 2 games and shoes!

Plus they'll be a 50/50 Raffle, JHD bracelets, ribbons and key chains!

What: Juvenile Huntington's Disease Dreaming of A Cure Bowl-A-Thon

When: Sunday, November 22nd

Start: 5 PM

Where: Mine Shaft/Rock House

http://www.mineshaftfun.com/

915 Razorback Dr Houghton, MI

49931-2801 (906) 482-1230

A 19 year old Gay was Decapated

What was left of gay 19 year old Puerto Rican teen Jorge Steven Lopez Mercado’s was a mangled body. Because this kid was gay, he was murdered, by a hate full bigot. One of the Police Officer's on the Scene, was a bigot too. He said this “People who lead this type of lifestyle need to be aware that this will happen.”

There is no way that people should die at all. It does not matter what you are and who you are, is worth getting murdered.

Like all of these Hate Crimes go under Radar. No one cares about there lives lost. No one cares about their lives. They are real people, like us. They have hearts. Lots of bleeding hearts, that people, don't want to see. I do care. Everyone hurts my heart. Most of our friends are gay or Lesbian. They don't deserve abuse. No one should.

Sounds During Sleep Boost Memory

Researchers are learning more and more about how our senses aid memory and learning while we sleep.

http://www.webmd.com/brain/news/20091119/sounds-during-sleep-boost-memory?ecd=wnl_day_112009

Brand new JHD Blog

This is started by someone I know on WEAREHD.org. It is a blog from a girl who has JHD. It is on my links page. It is Katelyn's story.

Trevor is working in Swan Valley, for his school volunteer hours.

Trevor and I are going to work in the dementia ward together. Trevor gets his school volunteer experience. He needs 30 hours to get into school. He also might get to go for free. There is an EI program, that will help you pay for school. They all know Alice, she was a great RN. They get a good impression of Trevor, because of his Mother. I heard at Church from Jack, who I used too work there with. He told me they are going crazy at sun downing. That is why I am back and Trevor will join me. We are going to work together.

Helping out the HD Calgary Society Again

I got this email today.

Trevor and I loved helping the Calgary Society throw a garage sale. We raised a lot of money for them. It feels good to be in another Provenience and still help.

Hi Heather:
I am the new Resource Centre Director in Calgary and came across your website. You have put a lot of info and of yourself into it. I would like to use some of your story in some HD groups and meetings from time to time to encourage others. Is that all right with you if I give you credit for what you stated and use your own words as well as referring people to your site?

supporting children who are in families living with chronic disease

Dear Friend,

The Huntington Society of Canada has heard from people within Canada that there is a lack of programming and support to children who are in families living with HD.

We have already spoken to an expert in the field of supporting children who are in families living with chronic disease, and now we want your perspective.

Below you will find links to two short surveys (approximately 5 minutes in length).
· HD Adults – for those who are over 18, and have been a child in a family living with HD (gene positive, gene negative or at risk) (link below)

https://www.surveymonkey.com/s.aspx?sm=jrQltF3Tc9AnAVtWZR_2fJlA_3d_3d

· HD Families – for parents who are currently raising children in a family living with HD (gene positive, gene negative or at risk, living with HD, spouse/partner, and others) (link below)

https://www.surveymonkey.com/s.aspx?sm=4SlrdQhKFZ6mwcY5eQ_2fsdg_3d_3d

We recognize that some people may feel it is appropriate to answer both surveys as they are both a parent and an adult who has experience in being in a family living with HD and you are welcome to complete both. We will be continuing to accept responses until December 4, 2009.
Thank you for your participation!

Hope From Stem Cells

In China, they cure the incurable. They have found ways to cure HD and a whole lot of other disease's. They have the best technology and are the number one company in the world. In the two years, I have been following them, there have cured 6000 people. When I first, found them, their were at 800. They have found safe stems cells. They have done 20,000, tests. We are looking, and might get some.

Aging parents: 5 warning signs of health problems

Concerned about your aging parents' health? Use this guide to gauge how your aging parents are doing — and what to do if they need help.

http://www.mayoclinic.com/health/aging-parents/HA00082

Alzheimer's: Managing sleep problems

If you're caring for a loved one who has Alzheimer's, sleep disturbances can take a toll on both of you. Here's help promoting a good night's sleep.

http://www.mayoclinic.com/health/alzheimers/AZ00030

An organization for huntington’s disease awareness

The Faith and Hope Society founded by Kimberly Gibson in 2009 is a non-profit organization that raises awareness of Huntington’s Disease. The Society works to educate elected officials in the struggles of those afflicted with the disease to bring a wider recognition of the help that is needed for these courageous people. Our goal is to bring public awareness and secure government funding to aid the people in need. We want to help children and families that suffer from this disease to have the tools to better cope with the life change and uncertainty that comes with this affliction. For us, this means promoting and supporting research and medical efforts to eradicate Huntington's Disease. It means educating the public and health professionals about Huntington's disease. It means that hopefully soon the disease will not be considered an Orphan disease and will get the proper funding for research it deserves.

http://www.faithandhopesociety.org/

Meds need a Review/ Getting sicker

I am bowling two games instead if three. It tired me out. I have lost my coordination and strength, in Rhythmic Gymnastics. My chorea is getting worse. I am having trouble eating. I am having trouble getting, in and out of vehicles. I am also struggling. My meds aren't working. I am up and down. Fighting depression. Trevor and my Dad are really worried. Trevor, gets more worried, every day. I keep telling, him stem cells. I am trying to get some to cure Gary and me. We would do it together, to support, one another. We both would be cured, and have our lives back.

Ariel receives the medal from the Honourable Daved C. Onley, Lieutenant Governor of Ontario and Michael Chen, Minister of Citizenshi

The Huntington Society of Canada is pleased to announce that Ariel Walker co-founder of the Huntington Society of Canada, was awarded the Ontario Medal for Good Citizenship last night at a Queen’s Park Ceremony by David Onley, the Lieutenant Governor of Ontario.


Ariel receives the medal from the Honourable Daved C. Onley, Lieutenant Governor of Ontario and Michael Chen, Minister of Citizenship and Immigration.


The Ontario Medal for Good Citizenship is an official award of the Province and recognizes and encourages the virtues of good citizenship. Recipients must have made outstanding public contributions through exceptional long-term efforts. The award reflects their acts of selflessness, generosity and kindness, and exceptional contributions to community life. The award consists of a silver medal emblazoned with the provincial coat of arms on one side and the trillium on the other.

Ariel and her late husband Ralph started the Huntington Society of Canada from their home in Cambridge, Ontario in 1973. Their unselfish efforts, vision, and persistence have enabled the organization to grow to serving families across the province.

“Ariel Walker is a role model for the citizens of Ontario. She cares about people, she advocates on their behalf, and she acts with reason. Her leadership within the organization, both in the early years and still today, is respected and valued”, says Don Lamont, CEO & Executive Director of the Huntington Society of Canada.The relentless work by Ariel Walker throughout the infancy of the organization has been instrumental in providing support to families and individuals.

Countless families today depend on the work of the HSC to provide them with the necessary tools for dealing with the challenges of Huntington disease.

The foundation that Ariel established with the Society has allowed families to have hope. This hope has carried families since the organization began. With hope, families can continue to hold their heads high and battle this devastating disease with support and dignity. Ariel has made personal contacts with thousands of families across the province, and they appreciate her sincere interest in their well being. Ariel acts upon suggestions, listens to the families, and has made efforts to ensure that the processes and structure are in place to best support families.

Please join us in congratulating Ariel on this well-deserved award.

China Stem Cell Video

http://www.stemcellsforhope.org/forums/index.php/topic,23.0.html

Researchers find potential treatment for Huntington's disease

Researchers find potential treatment for Huntington's disease
Better understanding of synaptic activity may support 'use it or lose it' hypothesis

VIDEO: Dr. Stuart Lipton describes his Nov. 15, 2009, paper in Nature Medicine, in which he and colleagues show how synaptic activity protects the brain from the misfolded proteins that characterize...
Click here for more information.
Investigators at Burnham Institute for Medical Research (Burnham), the University of British Columbia's Centre for Molecular Medicine and Therapeutics and the University of California, San Diego have found that normal synaptic activity in nerve cells (the electrical activity in the brain that allows nerve cells to communicate with one another) protects the brain from the misfolded proteins associated with Huntington's disease. In contrast, excessive extrasynaptic activity (aberrant electrical activity in the brain, usually not associated with communication between nerve cells) enhances the misfolded proteins' deadly effects. Researchers also found that the drug Memantine, which is approved to treat Alzheimer's disease, successfully treated Huntington's disease in a mouse model by preserving normal synaptic electrical activity and suppressing excessive extrasynaptic electrical activity. The research was published in the journal Nature Medicine on November 15.

Huntington's disease is a hereditary condition caused by a mutated huntingtin gene that creates a misfolded, and therefore dysfunctional, protein. The new research shows that normal synaptic receptor activity makes nerve cells more resistant to the mutant proteins. However, excessive extrasynaptic activity contributed to increased nerve cell death. The research team found that low doses of Memantine reduce extrasynaptic activity without impairing protective synaptic activity. The work was led by Stuart A. Lipton, M.D., Ph.D., director of the Del E. Webb Center for Neuroscience, Aging and Stem Cell Research at Burnham and professor in the department of Neurosciences and attending neurologist at the University of California, San Diego and Michael R. Hayden, M.D., Ph.D., University Killam professor in the department of Medical Genetics at UBC and director of the Centre for Molecular Medicine and Therapeutics at the Child & Family Research Institute.

"Chronic neurodegenerative diseases like Huntington's, Alzheimer's and Parkinson's are all related to protein misfolding," said Dr. Lipton. "We show here, for the first time, that electrical activity controls protein folding, and if you have a drug that can adjust the electrical activity to the correct levels, you can protect against misfolding. Also, this verifies that appropriate electrical activity is protective, supporting the 'use it or lose it theory' of brain activity at the molecular level. For example, this finding may explain why epidemiologists have found that 'using' your brain by performing crossword puzzles and other games can stave off cognitive decline in diseases like Alzheimer's."

In the new study, researchers initially tested nerve cell cultures transfected with mutant Huntingtin protein and found that reducing excessive NMDA-type glutamate receptor activity with Memantine and other antagonists protected the nerve cells (glutamate receptors are the main trigger of excitatory electrical activity in the brain but in excess can cause nerve cell death, a process called excitotoxicity). They also found that normal synaptic activity was protective.

Subsequently, they treated Huntington's disease model mice with both high and low doses of Memantine and found that the low doses were protective by blocking pathological extrasynaptic activity, while high-dose Memantine encouraged disease progression because it also blocked the protective synaptic NMDA receptor activity.

"For a long time it's been known that excitotoxicity is an early marker of Huntington's disease," said Dr. Hayden. "However, now we have dissected the mechanism by which this happens, particularly focusing on NMDA receptors outside the synapse. This creates novel therapeutic opportunities to modulate these receptors with potential protective effects on nerve cells."
A small human clinical trial of Memantine for Huntington's disease has also recently shown positive effects. Larger, international clinical trials are now being planned.

Dr. Lipton is the named inventor on worldwide patents for the use of Memantine (marketed in the USA under the name Namenda®) in neurodegenerative disorders, including Alzheimer's and Huntington's disease. He is credited with the groundbreaking discovery more than ten years ago of how Memantine works in the brain and for spearheading early human clinical trials with the drug.

Relay For Life early bird registration is now open/ Trevor in Nursing School

My family is all better.Today, I went to Church for a Scrap booking class. I am making one for my Mom. It is a memorial book. I have been, wanting to do it for awhile. It is fun. Trevor finally got into School, to become a Home Care Aide. He is doing his Volunteer work, at Swan Valley. It is where, his Mom and I worked, in the Dementia Ward. I am getting into the early bird, Relay for Life, again. I am hoping to raise more, then 110, this year. I want, to do more than 27 laps too. I am aiming for more. I am doing this for my Grandma and my little cousin Kaiden. Cancer, runs into my family too. I love helping out the HD society and also the Cancer Society. They both affect my life. I want more luminary ceremony. I loved that candle light vigil. Fight with me. Keep up hope, for breakthroughs. Join me, Get active. Be community conscious.

Top Health Blog for 2 years in a Row

Hi,Disease.com is currently in the progress of choosing blogs to receive recognition from Disease.com as Top Blogs. This award is not meant to be anything other than a recongnition that your blog gives information about tactics that directly or in directly raise health awareness and prevent the transmition of Disease. Simply place the award banner code on your site and your blog will be listed as a Top Blog on Disease.com. Disease.com is a Private Global Health Watch Group. Whose goal is to promote healthy living though the spread of information globally. Thank you for your dedication to your blog.

HDSA's Inaugural Caregiver's Corner Webinar!

HDSA's Inaugural Caregiver's Corner Webinar!

http://www.hdsa.org/index/caregiver-webinar.html

The Huntington's Disease Society of America invites to attend the inauguralCaregiver's Corner webinar on Monday, November 30, 2009 at noon EDT. Caregiver's Corner is designed to provide information, resources and supportfor caregivers so they are better able to face the daily challenges ofliving with HD. Our first webinar will feature Marsha Miller, Ph.D., a caregiver, frequentpresenter and editor of the HD Lighthouse web site. Dr. Miller'spresentation will focus on Coping Strategies for Caregivers. The webinar will run one hour with time at the end for questions. A shortsurvey immediately following the webinar will ask viewers to rate thewebinar so we can continue to improve the process, the subject matter andthe way in which information is communicated.

If you cannot join us on Monday, you can still view this presentation atyour leisure by visiting the HDSA web site (www.hdsa.org)

approximately 24hours after the live webcast. A link on the HDSA home page will take you tothe webinar. Thereafter, older webinars will be archived in the Living withHD section. To register to attend the webinar please go to:

https://www2.gotomeeting.com/register/521635458

After registering you will receive a confirmation email containinginformation about joining the Webinar. Participating in the Webinar is very easy. All you will have to do is go tothe link you receive after you register. If this is your first Webinar werecommend that you log on five minutes before the start of theWebinar as it may take a few minutes for the process to complete. We look forward to seeing you there. This pilot series is made possible by an educational grant from Lundbeck.

Cranbrook tomarrow/Demintia Ward

I am going to Cranbrook tomarrow. Trevor has been in tears and worried again. I am getting sicker. My chorea is getting worse. I keep telling him I will be cured, so as I get my Stem Cells. I have been Researching for two years, to find some for me and Gary. We are taking it slow, trying not to be rash. Home Support is backing out of the things, they promised. They don't want to cook anymore. My Father-In- Law, hooked us up with a Nurse. He can pay for one, hour a day. She makes amazing dinner, and she leaves the house spotless. Trevor hated cleaning by himself. We need help there. My family is feeling better. Gary did go back to work yesterday. I am trying to go back to Swan Valley, where I looked after Molly. I talked to Jack, in Church, he said that everyone is walking around confused. I want to go to sundown, to do the best I can. Come on everyone, help out. Make a difference.

Show your support and VOTE!

Show your support and VOTE!

Our young people need your help! Please read the message below and click on the link to cast a vote. For those of you who aren't aware our young people have formed a Chapter called Young People Affected by Huntington Disease or YPAHD for short.

YPAHD has entered a competition sponsored by the Aviva Community Fund to raise much-needed funds. If their idea receives enough votes, it will have a chance at sharing in $500,000!
Please vote for HD Youth - UNITE THE FIGHT right now and pass this on to as many contacts/friends/family as possible.

What do I do to help?
Go online and vote for the idea -- If this idea receives enough votes it will move to the sem- final competition.

When should I help?
Right now! We have only 5 days before this round of the competition closes

How do I vote?
1. http://www.avivacommunityfund.org/ideas/acf18532. Please register (it’s easy, requires very little information and takes less than a minute) and vote for the idea 3. You can also add a comment which would be a real boost to the youth in YPAHD who are working very hard to make this event a reality

THE IDEA…
YPAHD is to establish HD Youth - UNITE THE FIGHT- a grassroots series of 5 km run/ walks or other events which would take place in 10 major cities across Canada – from coast to coast. Planned by youth for youth, with the help of HSC, these grassroots events would bring youth together from the HD community and beyond to educate people about HD, eliminate the stigma by normalizing this disease, build leadership skills, and create a platform for youth to be heard across Canada.

A great big THANK YOU for your support!

Medical history: Compiling your medical family tree

Medical history: Compiling your medical family tree

Your family medical history provides insight into the conditions that are common in your family. Use this history to give you clues about your risk of disease.

http://www.mayoclinic.com/health/medical-history/HQ01707

Fight stress by reaching out, not retreating

Fight stress by reaching out, not retreating

During the last century, few thought anyone would ever climb Mount Everest, explore the North or South Pole, or swim the English Channel. But men and women have accomplished these amazing feats. The first woman to swim the English Channel was Florence Chadwick.
In one of Chadwick's early swims, she was enveloped by fog and gave up her attempt just 2 miles shy of her goal. Her spirit broken, she was lifted into the support ship, where she was treated for hypothermia and dehydration. Several hours later, the fog lifted. The crestfallen swimmer, still on the boat, said that if she had only been able to see the goal she could have endured the hardships. In other words, when we lose sight of our goals, our courage and fortitude can fail us.
John Donne wrote that no man is an island. We cannot succeed alone. Like the swimmer, we need a support staff and a rescue boat. If we have a heart problem, we need a cardiologist. If we have a kidney problem, we need a kidney specialist. Likewise, if we are struggling with emotional issues, we need the help of an expert — a psychiatrist, psychologist or social worker.
So, the lesson for today is clear: If we feel hopeless and can't find our way, we owe it to ourselves to reach out for help and guidance.

Desperately Seeking 60 Good People

Desperately Seeking 60 Good People

Posted November 3, 2009 by LaVonne Goodman
We need 60 more good Huntington's people to get the ACR16 trial done in North America. Do you know that 90% of the more than 400 Huntington's participants from the European trial have petitioned centers so that they may continue ACR16 compassionate use after the trial? This remarkably high number suggests that Huntington families in Europe believe that ACR-16 may be doing something very good.

http://hddrugworks.org/index.php?option=com_content&task=view&id=254&Itemid=30

WEAREHD.ORG Needs Adovcacy help in Oregon

Needs Adovcacy help in Oregon
I have been trying for the last few months to get a group together to go up to Salem and talk to our Congressman about HD 678. I was going to go alone, and still will if need be, but am looking for people who are in Oregon and would like to make it a big group to show our Support. I am in the 4th Congressional District. If you or anyone you know would be willing to go let me know!

Happy Remembrance Day

Today is the day, where we remember the Soldier's, that fought for our freedom. We don't want to imagine life with Hitler as world leader. These, Soldiers on the front line, made it possible, for us to live free. World War 2, was when Canada stepped up and began a Sovereign Nation. Hitler, gassed any one with genetic illnesses. For my American friends, you came in and helped us so much. Everyone got together, as nation's to fight Hitler. We owe, our lives to these brave soldier's. Have a Moment of silence, with me. Trevor's Grandparent's were in World War one. His Grandpa, was a fighter Pilot. They were all lucky to survive.

Happy Remembrance Day

Stem Cells in China

My family is looking into Stem Cells in China. They have treated an HD person, with HD. I have been following this Clinic, for 2 years now. They hve tested and made their Stem Cells to work.

Choosing to undergo adult stem cell therapy or deciding the time is right for your child or loved one to receive it is a huge decision. While umbilical cord blood stem cells and autologous bone marrow cells are by no means rare in this world gaining access to them is fraught with challenges. But access isn't a challenge in China. Safety tests for your own bone marrow have long shown infusions to be safe and umbilical cord and cord blood stem cells have been safely received by six thousand patients in China now. That represents well over 20,000 transplantation events and opportunities for safety data to present a problem. It simply hasn't.

http://www.stemcellschina.com/?gclid=CN20y9G2_50CFSUsawodVkwapg

HD patient

http://www.stemcellschina.com/index.php/en/huntingtons-ms-arroyo

"Stigma, Secrecy and Medical History: What Can We Learn from Huntington's Disease?"

For those in the area, these events are hosted on by the University of Texas at San Antonio and are open to the public. For more information, contact Salma Quraishi at (210) 458-7493.Tuesday Nov.10 5PM - Alice Wexler will speak on "Stigma, Secrecy and Medical History: What Can We Learn from Huntington's Disease?" at University Center Retama Auditorium (2.02.02) on the Main Campus. Free and open to the public, a reception will precede the lecture at 4:30 p.m. Wednesday Nov.11th 6PM - Nancy Wexler will speak on "Expansions on a Dream: From Cause to Cure of Huntington's Disease" in the Main Building Auditorium (0.104) on the Main Campus. Free and open to the public, a 5:30 p.m. reception will precede the lecture.

Huntington's Society shakes up Bond theme

Huntington's Society shakes up Bond theme

http://www.denverpost.com/headlines/ci_13360708

Had a Mountain Goat Good Time

We went to Radium, and met up with Trevor's family. 100's of Mountain Goats, ran by Alice's condo. We went for walks, and surrounded by them. They had Babbie's, and Mommies. I am obsessed, with Mountain Goats. I thought, we would only see a few, but we ran into 100's. They were so cute. My family is slowly getting better. My cold is slowly, going away too. Have fun. Live a little. Celebrate life. Don't let HD drag, you down. Live your life with passion. Feel what you want to do. Feel your life. Feel your heart. Do what the heart, wants you to do.

Our Inspire Hope Amaryllis Garden is bursting into bloom! Here are just some of the messages planted in our garden

Our Inspire Hope Amaryllis Garden is bursting into bloom! Here are just some of the messages planted in our garden:

”Nobody can do everything, but everyone can do something to make a difference.”
“As an old Scottish proverb says, ‘Were it not for hope the heart would break’”
“A cure for this horrible disease cannot come soon enough”

Check out all the messages at

http://www.inspirehope.ca/.

November is Amaryllis month in your community, across Canada and even on Parliament Hill! All our MPs are wearing an Amaryllis pin this month.

Celebrate Amaryllis month – and inspire hope for a world free from HD by planting a flower in our Garden today. You can also Tell Your Friends, Grow Your Knowledge and learn more about our Amaryllis Campaign at http://www.inspirehope.ca/.
Every Amaryllis inspires hope!
Yours for a world free from HD

There is a very pressing need to frankly discuss one of the most debilitating symptoms in the neuropsychiatric sequelae of “softer”

There is a very pressing need to frankly discuss one of the most debilitating symptoms in the neuropsychiatric sequelae of “softer” symptoms in Huntington’s Disease- sub-cortical “frontal” dementia. Unfortunately, since there are far more patients with Alzheimer’s Disease (AD) and the cortical dementia associated with it, virtually all medical professionals recognize it more easily and disappointingly assume that person’s with other neurological diseases, especially Huntington’s Disease (HD), should look, act and respond the same way to questioning as those with AD do. This is sad how HD people are treated in the US.

http://www.hdac.org/features/article.php?p_articleNumber=637

New gene therapy halts 2 boys' rare brain disease

New gene therapy halts 2 boys' rare brain disease

WASHINGTON – French scientists mixed gene therapy and bone marrow transplants in two boys to seemingly halt a brain disease that can kill by adolescence. The surprise ingredient: They disabled the HIV virus so it couldn't cause AIDS, and then used it to carry in the healthy new gene.

http://news.yahoo.com/s/ap/20091105/ap_on_he_me/us_med_gene_therapy

Sibling researchers on Huntington's disease to speak at UTSA Nov. 10-11

The UTSA Neurosciences Institute will present two lectures Nov. 10-11 by sibling scholars Alice Wexler and Nancy Wexler, who are researching different aspects of Huntington's disease, which also has directly affected their family. The evening lectures are free and open to the public.

http://www.utsa.edu/today/2009/11/wexlerlectures.html

Radium Tomorrow

My family is getting way better. I had to miss Special O and the Gleaner's today. With my cold, I did not want to spread it. We are going to Radium tomorrow. I will leave Friday morning and be back on Monday. I am so excited. I love Radium. It is in a National Park. We are going to meet Trevor's Mom there. We are going to ride, with Trevor's Dad. We are taking both of our dogs. We are staying in that great Doggie Motel again. It is one of the nicest Hotels we have been at. Everyone, remember, the hope, that gets us free, from pain. Don't lose that shine. Don't lose that sparkle. Get free. Keep your heart safe. Don't let HD, take your heart away.

Learning about HD – a child’s response

Learning about HD – a child’s response

Each family reacts differently to a diagnosis of Huntington disease and the way in which each family member copes can vary from person to person. Some families love quite well with the knowledge, but it’s not unusual to see common emotional reactions from children who are suddenly faced with the news that a parent has HD.Many children go through a grieving process, reacting to the changes that HD may have brought into their lives.

They may have lost involvement with a physically active parent or feel that their carefree childhood is over due to the worries associated with having an ill parent. They may be needed to take on more responsibilities and, as a result, lose some of their free time.Shock is another normal reaction, particularly when first learning of the diagnosis. This can lead to the child feeling frightened or worried.Denial often follows shock. Some children may pretend that nothing has really happened and others may not ask any questions, hoping that the disease will go away if they ignore it. Denial can actually serve a purpose, allowing children to absorb the news and get over the initial shock without having to deal with painful emotions.

Anger is often the next emotion to follow and may be directed at various people, including the person with HD. Though it’s not wrong to feel angry, children may not always express their anger in the most appropriate ways. Family members should remember that anger is a natural reaction to the disease and any changes in the family’s lifestyle.

Sadness and guilt may be next, particularly if the child feels guilty for getting angry or feels responsible for the disease and some of its symptoms. Though sadness diminishes in most cases, there are times when it can turn into depression. If children become withdrawn and isolated, or their relationships with friends and social activities become restricted, depression could occur and may require outside help.Fear of the future is another worry that children may have.

Most are afraid of losing their parent or relative to HD and some experience concerns about their own futures due to genetic risk. Anxiety can also increase as young people worry about their parents, other family members and themselves.Having a parent who looks or acts differently due to HD can cause feelings of embarrassment. They may avoid bringing friends home and may not want their parent going to school or to social activities.It’s important to remember that each child is unique and will react differently to the diagnosis. Try to be attentive to the needs of each child. Being aware of and understanding your child’s emotional reactions is the best way to help your child cope with the impact of HD.

Adapted from the fact sheet: Learning About HD-a Child’s Response. Click here to access the fact sheet.

Family better

My family's H1n1, symptoms are started to disappear. I got another cold. I went to Doctor walker's, he told me I gained one pound. I am 4 pounds away form my goal. I weigh 21lbs now. You have to be 120lbs, to fight off, any auto immunine disease. I want to get to 125, t0 be safe. Creatine, has helped me get here. It has helped, me look fuller, instead of deathly skinny. Fight to stay as healthy as possible. Fight every last breathe, to fight HD. take care of yourself.

HDSA Events

KENTUCKY
Saturday, November 07, 2009
Team Hope Walk- Kentucky Chapter
5K Michelle Litteral Brock Memorial Walk/Run
Corbin Intermediate School
404 17th Street
Corbin, KY
For more information contact:
Karen White 606-258-7691
Marcee Hopper
606-526-1019

MARYLAND
Saturday, November 21, 2009
3rd Annual Huntington Disease Clinical Research Symposium
Huntington Disease Clinical Research Symposium - November 21, 2009
The Third Annual Huntington Disease Clinical Research Symposium (HDCRS) will take place on Saturday, November 21, 2009, at the Hyatt Regency Baltimore in Baltimore, Maryland. Register now for the Symposium. The Call for Abstracts is also available.

The 2009 HDCRS Keynote Speakers have been confirmed as follows:
Keynote Presentations I & IIJudy Roberson, RN, President, HDSA Northern California Chapter "Huntington's Advocacy: Why I Care"Keynote Presentation IIIJan Nolta, PhD, University of California, Davis "Working Toward Mesenchymal Stem Cell Therapy for HD"
Keynote Presentation IVCelia Witten, PhD, MD, Center for Biologics Evaluation and Research, Food and Drug Administration "FDA Regulation of Stem Cell Therapy"
The Second Annual Huntington Disease Clinical Research Symposium (HDCRS) took place on Saturday, November 15, 2008, at the TradeWinds Hotel, St. Pete Beach, Florida. Please see the Symposium Summary and the 2008 HDCRS Program for more information.
The Inaugural Huntington Disease Clinical Research Symposium took place in Boston, Massachusetts in December 2007. A copy of the 2007 Symposium Program is available. The 2007 Scientific Summary Report (by Lisa J. Bain) is also available.
Saturday, November 21, 2009
2009 HSG Clinical Research Symposium

For additional information please go to: http://www.certain.com/system/profile/web/index.cfm?PKwebID=0x157492bc5c

MASSACHUSETTS
Saturday, November 07, 2009
New England Education Day
Marlborough Holiday Inn, Marlborough, MA
Agenda
8:30-9:00 Registration
9:00-9:20 Welcome
9:20 -10:10 Basic Research Update
10:10-10:30 Break
10:30-11:20 Clinical Research Update
11:30-12:20 Walking on Eggshells:
Managing the emotional
issues that arise in HD.
12:30-2:00 Lunch
2:00-2:50 Workshop Sessions
A. Pre-Symptomatic
Genetic Testing
B. Juvenile HD
Information for Parents
C. Financial and Legal
Protection Tools for
Individuals and Families
(*Massachusetts)
3:00-3:50 Round Table Discussions
*Ask the Doctor
*Guardianship in MA~
New Uniform Probate Code
*Caregiving
*Juvenile HD
*Speech & Swallowing
*Complementary and
Alternative Therapies in
HD.
3:50-4:00 Wrap up

Early Bird - $20.00 per person.
Must be dated by 10/23/2009
Regular Registration - $25.00 per person.
Must be dated by 11/01/2009
At the Door - $35.00 per person.

NEW YORK
Saturday, November 07, 2009
Hoop-a-thon- Upstate NY
Thursday, November 26, 2009
Race with Grace- Upstate NY Chapter
First Bible Baptist Church, Hilton, NY
Saturday, November 07, 2009
Shoot for a Cure- Upstate NY Chapter
Save the date...
more information to follow...

NORTH CAROLINA
Saturday, November 21, 2009
Shoot for the Cure Hoop-a-thon- North Carolina
Cardinal Gibbons High School Hoop-A-Thon
Saturday November 21,2009
9:00 am - 12 Noon
Cardinal Gibbons High School
1401 Edwards Mill Road
Raleigh, N.C. 27607
60-80 Shooters
for more information contact
Kelvin Wood 919-224-7866
or
John Canning @ 919-669-2560

WASHINGTON, DC
Sunday, November 08, 2009
Washington Metro Chapter Fundraiser
Hard Times Cafe- Fairfax Fundraiser - Restaurant Day & Night – SUNDAY November 8th
The folks at Hard Times Cafe in Fairfax will donate 20% of all food sales to the Chapter on Sunday, November 8th. The restaurant, located at 4069 Chain Bridge Rd, will begin serving food at 11am and will remain open to 1am. Please come by and enjoy some great food at Hard Times while helping the Chapter. You will need to present the chapter Hard Times Flyer for the Chapter to get “credit” for your purchase. Click here to download the flyer: too. http://www.dchdsa.org/hardtimescafeflyer.pdf . Visit http://www.hardtimes.com/ for menu info and directions.

The Search for Genetic Modifiers

The Search for Genetic Modifiers

The age of onset varies widely in Huntington's Disease, from infancy to old age. Statistical analysis of large samples of patients shows that the single most important factor influencing age of onset is the CAG count, explaining about two-thirds of the variance. The higher the count, the earlier the average age of onset. Although this relationship is very clear on the aggregate level, there are significant variations among individuals and it is possible for two people with the same count to have onsets a decade or more apart.

http://www.hdsa.org/research/news/geneticmodifiers.html

Pre-Clinical Research Findings

Pre-Clinical Research Findings

Alnylam Pharmaceuticals, Inc., a leading RNAi (gene silencing) therapeutics company, and Medtronic, Inc the world’s leading developer of medical devices, announced the presentation of new pre-clinical research findings from their Huntington disease program at the 2009 World Congress on Huntington’s Disease held September 12-15, 2009 in Vancouver, British Columbia. Together, the two companies are developing a drug-device combination for the treatment of Huntington’s disease. The drug, ALN-HTT, consists of an RNAi therapeutic targeting huntingtin, the gene responsible for Huntington’s disease, and is delivered to the central nervous system (CNS) using an implantable pump infusion system developed by Medtronic.

The newly presented pre-clinical research, performed in collaboration with Professor Don M. Gash’s laboratory at the University of Kentucky College of Medicine, demonstrate that a small interfering RNA (siRNA) targeting the huntingtin gene achieves broad distribution in the CNS following continuous direct CNS administration. Further, direct delivery to the CNS resulted in robust silencing of the huntingtin gene mRNA, extending previously presented pre-clinical data. This silencing effect was achieved at substantial distances from the infusion site, an important step towards translating this delivery approach from animal models to the larger human brain. Additional pre-clinical studies showed ALN-HTT to be well tolerated following continuous direct CNS administration over a period of approximately one month.

HD Study NeuroSearch

HD Study NeuroSearch lead specialist product HuntexilTM (pridopidine) was the subject of several key poster presentations at this year's World Congress on Huntington's disease (WCHD) in Vancouver. Planned for market launch in 2011, HuntexilTM is in late stage clinical development as a novel therapeutic for the treatment of Huntington's disease. The focus was to share the most recent update and present supportive data on the company's two ongoing, large clinical development studies for HuntexilTM: MermaiHD in Europe and HART in North America. Both studies are designed to investigate the potential of HuntexilTM as a symptomatic treatment of the voluntary movement ability in patients with HD. The studies are randomised, double-blinded and placebo-controlled evaluating the efficacy, safety and tolerability of different HuntexilTM dosing regimens. Results

My family is getting better

My family, got H1N1, from the city where Scott lives. My Dad, went to a store, in Red Deer. There, was 2 workers. Everyone was coughing, like crazy. They all got it from Red Deer. Here, we run along with masks. We went to Church, they had hand sanitizer's here. everyone is careful. A lot of people here are sick with it. My Dad, thinks I should wait two weeks, to go back to Special O and Church. They had bad fevers, up to 108 celus. My Dad had both 0f them, go into a cold bath, at night. They broke, their fever's. My Dad, says Gary is ok. He was my worry, being it he has HD too. I will not get vaccinated. I am not afraid. My brother is doing fine. We are going to Radium, for this weekend. We are leaving Friday and will be back on Monday. We are going to Alice's, with Trevor's Dad. She has in the nice Doggie Hotel. I won best costume, at the Special O Halloween party. There were 5, who had H1N1, that could not go. We had fun, forcing, Trevor to dance. Everyone, take special percaustions with me. Fight to keep healthy. Fight H1N1. Stay safe, with me.

New TAU Formulation May Slow Down Parkinson's, Alzheimer's And Huntington's Diseases

Working like an architect, Prof. Hagit Eldar-Finkelman of Tel Aviv University's Sackler School of Medicine is "building" a new drug, L803-MTS, to treat a number of central nervous system (CNS) diseases like Alzheimer's. In pre-clinical studies, it also shows promise against Parkinson's, Huntington's and diabetes.

http://www.medicalnewstoday.com/articles/168878.php

Boost Your Immunity

Cold and Flu season is in high gear! Are you doing everything you can do prevent getting sick?

http://www.healthline.com/blogs/diet_nutrition/2009/10/boost-your-immunity.html?utm_source=blogs&utm_medium=healthline&utm_campaign=blogalerts&utm_term=Boost+Your+Immunity

new documentary film that features HD

The good news is there is a new documentary film that features HD!! The bad news is, the only place I can find where this is playing is Nov. 6-8th 2009 in NY [see below! However........you can watch the movie trailer here:

http://www.seewilletspoint.com/trailer.php.

Hopefully it will be a big success and shown either in the movie theaters or on TV soon! Willets Point The Movie 2009www.seewilletspoint.com

USA: 76 min Willets Point, directed by first time filmmaker T.J. Collins is a family drama that centers on Guillo and Doris Blanco, a young couple living in Queens New York along with their 9 year old daughter. Their financial and personal problems catch up with them when they are threatened with eviction. Their marriage is tested when these unbearable circumstances brings to light a troubled past and threatens the future they all share. Guillo Blanco (Alfredo Suarez), a mechanic in Willets Point Queens is fearful of losing his job as a result of eminent domain. His wife Doris Blanco (Lorraine Rodriguez) works for a wine distributor, selling wine to local restaurants. She is diagnosed with a rare fatal disease known as Huntington´s disease. This film intimately explores the lives of ordinary people and the extraordinary resilience of the human condition.

Willets Point rounds out the festival so I'm assuming that will be shown November 8th. Individual Program tickets are $12.

Long Island Latino International Film Festival, Nov. 6 to 8West Campus -

Wang CenterNicolls Road, Main Entrance

Stony Brook, NY 11794

Phone: (631) 632-6000

http://www.sunysb.edu/sb/wang/ - click on "Calendars" then go to November 6th - The Long Island Latino International Film Festival

My whole family has H1N1

Lucky has Cherry eye. It is a inflammation, in the third eye socket. It comes and goes. When, it comes back, it is easy to fix. My family, is all sick with H1N1. Gary has it, Dad has it and so does Scotto. Most of my Special friends had it. My Dad, recommends, that I don't need the vacinne.. Gary, has HD, and is holding, on better, then we thought he would. It is not as bad, as we thought, it would be.