Thursday, December 31, 2009
Enoying New Years tonight
Posted by Heather Dugdale at 10:21 AM 0 comments
Meds
Posted by Heather Dugdale at 10:08 AM 0 comments
Queston's on my blog
Everyone asks me queston's, for me to answer. If you want me to reply, leave your email. I will reply, right away.
Posted by Heather Dugdale at 8:58 AM 0 comments
Wednesday, December 30, 2009
I saved someone from choking to death
Posted by Heather Dugdale at 7:01 PM 0 comments
Friday, December 18, 2009
Leaving for Christmas
Posted by Heather Dugdale at 1:14 PM 0 comments
Thursday, December 17, 2009
More Updates
Posted by Heather Dugdale at 6:46 PM 0 comments
Merry Christmas
Posted by Heather Dugdale at 12:53 PM 0 comments
Wednesday, December 16, 2009
Researchers Say More Cancers Are Being Detected Early or Prevented Through Screening
This is for my Cancer family. Not only does my family have HD, we have Cancer too. We have lost two to Cancer and HD. Since, I am in a small community, that Cancer has got too. I know lots of survivor's. My favourite Nurse, Shirley, got me involved for Relay For life. Soon as my little cousin was 3, when he got Cancer. Me and Trevor saw him, he was in Remission, it looked like he could, do anything. His leukaemia, struck back. he died at age 7. People, just gave up, hope and the Relay. Shirley, to me, there was thousands of people. They have lost hope. My Grandma, lost his wife, to cancer too. He also has to deal, with My Mom and my Aunt, that has HD. Now he has Grand kid's, that have it. All of the Cancer work is keeping, Evey own, like down like us. Everyone, I knew, thought they had the cure and were holding it. I so not believe. That is why I am being, my Brother's advocate with my Dad. I watch, for new Research and send it to my Dad, he makes the I will always feel like I need to save my Brother.Shirley has her group, the Lions money for HD people. Here, she said,that we are getting, the donations right to theSociety and not to advertising.
http://www.webmd.com/cancer/news/20091207/cancer-death-rate-continues-to-fall?ecd=wnl_lbt_121609
Posted by Heather Dugdale at 1:44 PM 0 comments
Joining the HART study sometime, next year.
Posted by Heather Dugdale at 1:09 PM 0 comments
Tuesday, December 15, 2009
HART - ACR16, a dopamine stabilizer
A part of the study. If me and Gary can't get in, this time. We have 16 weeks, until they take the young ones. We want to keep. We need our cure. Join up. Do something that will help you ad other's in the Field.
http://www.hdsa.org/research/clinical-trials/ongoing-clinical-trials/acr16.html
Posted by Heather Dugdale at 9:42 PM 0 comments
Join the HART ACR16 trial, with Me and Gary
We want this amazing drug. It is amazing. Everyone, that sent me stories, about them and this drug, are postive. This is 0ur cure. Fight for it to be here.
Posted by Heather Dugdale at 8:58 PM 1 comments
Entering HART STUDY
Posted by Heather Dugdale at 10:43 AM 0 comments
Monday, December 14, 2009
Excited for Chistmas/ Meds
Posted by Heather Dugdale at 1:34 PM 0 comments
Friday, December 11, 2009
Desperately seeking 60 good people
Posted by Heather Dugdale at 6:06 PM 0 comments
Track-HD reports baseline findings
Me and Gary are part of the study. We go see our Nero and track our results.
http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=653
Posted by Heather Dugdale at 12:43 PM 0 comments
Cogane
Posted by Heather Dugdale at 12:38 PM 0 comments
Mesenchymal stem cells repair neurotoxin damage in an animal model
Posted by Heather Dugdale at 11:36 AM 0 comments
An interview with Dr. Jan Nolta
Join Stem Cells clinical trials. This mine and Gary's cure. Join, this amazing study. Stem cells are the strongest hope.
http://www.hdlighthouse.org/showUpdate.php?p_articleNumber=657
Posted by Heather Dugdale at 11:27 AM 0 comments
Thursday, December 10, 2009
Volunteer Registration
Posted by Heather Dugdale at 9:05 PM 0 comments
Non-profit Fundraiser Bundles - Footworks, Hannah Montana and High School Musical.
Get Christmas Bundles
Posted by Heather Dugdale at 7:38 PM 0 comments
Cedars-Sinai Regenerative Medicine Institute To Supply Stem Cells To Scientists Developing Treatments For Huntington's Disease
Gary and my cure. Stem cells are the way of the future, to cure HD.
Posted by Heather Dugdale at 5:47 PM 0 comments
State-by-State Help for Family Caregivers
This the first and only State by State Caregiver research.
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=368
Posted by Heather Dugdale at 5:35 PM 0 comments
Wednesday, December 9, 2009
Lot's of Christmas Parties
Posted by Heather Dugdale at 7:31 PM 0 comments
Green Tea Chemical Combined With Another May Hold Promise for Treatment of Brain Disorders
Posted by Heather Dugdale at 2:56 PM 0 comments
Slide show: Balance exercises
Exercise to help you gain back your balance.
Posted by Heather Dugdale at 11:32 AM 0 comments
Alzheimer's and the holidays: Find real joy by simplifying
Posted by Heather Dugdale at 11:27 AM 0 comments
Tuesday, December 8, 2009
First Steps for New Caregivers
Posted by Heather Dugdale at 11:18 AM 0 comments
Find A Cure Panel for Caregiver Research
Everysurvey, you do, 25 dollars are donated to Caregiver Research
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1001
Posted by Heather Dugdale at 11:18 AM 0 comments
Monday, December 7, 2009
Start of Christmas and Therapeutic Horse Riding
Posted by Heather Dugdale at 6:20 PM 1 comments
Amaryllis Campaign
My family buys these Amayllis every year. Support and by these flowers.
Posted by Heather Dugdale at 1:15 PM 0 comments
Friday, December 4, 2009
Med mix up
Posted by Heather Dugdale at 2:04 PM 0 comments
Managing Medications from a Caregiver's Perspective
Posted by Heather Dugdale at 12:27 PM 0 comments
I almost burnt down the house today/ DBT therapy
Posted by Heather Dugdale at 12:05 AM 0 comments
Thursday, December 3, 2009
Coping with stress — What role models teach us
My Dad is my most role model- He did everything he could for Mom, including trying, to build that HD group home. My Uncle Frank, god bless him, He just could not stay with Aunt Tracy. It is hard to stay with someone, who has it. My Dad tried his hardest to sty with Mom. My Dad, is now looking after Gary. My Dad is the ultimate care giver. He will never stop supporting us. Every time, get sad or upset, I always call him. He leaves his work, phone always for me.
My role models were, Princess Diana- she was just so kind and giving, my Mom and I loved her
My Grandma Noble- She raised me- they gave up some wetlands, for fish and wildlife. She was the sweetest woman. She gave me my strong values, that I never broke.
My Aunt Karen- She Foster's Fetal Alcohol Syndrome. She fought and won their custody, when they were going home, to a unfit parents. Last Christmas, she got to cute FAS baby's, that nobody wanted.
Posted by Heather Dugdale at 12:56 PM 1 comments
Being grateful: Giving thanks helps with depression
Give Thanks for everything good in your life. Instead of looking down.
Posted by Heather Dugdale at 12:53 PM 0 comments
Forgiveness: Letting go of grudges and bitterness
Before, I had HD, I held a lot of hate. Half of my family, did not think, we should of kept Mom alive. My mom, never wanted to give up. She was strong. My Dad, did not want to let her go. Soon as I got HD, myself, I let it all go. there is no room for hate, expesepily if you have so little time in the world. Let it all go.
Posted by Heather Dugdale at 12:30 PM 0 comments
Wednesday, December 2, 2009
3rd Annual Curtains Up for a Cure Concert to Feature Kimball, Murney, Von Essen, Champlin and More
Posted by Heather Dugdale at 8:56 PM 0 comments
Tuesday, December 1, 2009
Can't blog tonight
Posted by Heather Dugdale at 9:06 PM 1 comments
Easing Knee Pain: 10 Reasons to Start Walking
10 good reasons, why you should walk. It is a healthy and simple way, to get healthy.
Posted by Heather Dugdale at 5:45 PM 0 comments
Ray of Sun Shine
Posted by Heather Dugdale at 4:43 PM 0 comments
Monday, November 30, 2009
Trevor is in Nursing School in Jan 4th
Posted by Heather Dugdale at 6:13 PM 0 comments
Friday, November 27, 2009
The Huntington Society of Canada is URGENTLY needing your input in to the development of a program for children are in families li
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=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!
Posted by Heather Dugdale at 1:38 PM 0 comments
Love my Dad
Posted by Heather Dugdale at 11:48 AM 0 comments
Thursday, November 26, 2009
Veggie again
Posted by Heather Dugdale at 5:38 PM 0 comments
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.
Posted by Heather Dugdale at 5:36 PM 0 comments
Herbal supplements: What to know before you buy
Herbal supplements aren't right for everyone. Get the facts before you buy.
Posted by Heather Dugdale at 5:35 PM 0 comments
Dietary fiber: Essential for a healthy diet
Dietary fiber offers many health benefits. Here's how to include more in your diet.
Posted by Heather Dugdale at 5:32 PM 0 comments
In the honor of my Cancer family
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.
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.
Posted by Heather Dugdale at 11:39 AM 0 comments
Wednesday, November 25, 2009
Me and Trevor at the Demintia Ward
Posted by Heather Dugdale at 6:54 PM 0 comments
Tuesday, November 24, 2009
Faith and Hope Society
Posted by Heather Dugdale at 4:29 PM 0 comments
Meds not working
Posted by Heather Dugdale at 11:15 AM 1 comments
Subject: NY Congressional District #19
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.
Posted by Heather Dugdale at 11:05 AM 0 comments
Monday, November 23, 2009
Genetic Testing Reveals Devastating Illness
He's a kindred spirit for you as another HD sufferer, and for me as a member of the tv news 'tribe'.
Posted by Heather Dugdale at 5:52 PM 0 comments
2nd Time on TOP Chronic Disease Blogs list again
Labels: q
Posted by Heather Dugdale at 1:57 PM 1 comments
Support "Making a Dream Reality........CURE Juvenile Huntington's Disease!"
Posted by Heather Dugdale at 1:51 PM 0 comments
Friday, November 20, 2009
A 19 year old Gay was Decapated
Posted by Heather Dugdale at 7:11 PM 0 comments
Sounds During Sleep Boost Memory
Posted by Heather Dugdale at 12:12 PM 0 comments
Brand new JHD Blog
Posted by Heather Dugdale at 11:06 AM 0 comments
Thursday, November 19, 2009
Trevor is working in Swan Valley, for his school volunteer hours.
Posted by Heather Dugdale at 11:42 AM 0 comments
Helping out the HD Calgary Society Again
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?
Posted by Heather Dugdale at 11:36 AM 0 comments
supporting children who are in families living with chronic disease
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.
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)
· 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)
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!
Posted by Heather Dugdale at 11:28 AM 0 comments
Wednesday, November 18, 2009
Hope From Stem Cells
Posted by Heather Dugdale at 1:49 PM 0 comments
Aging parents: 5 warning signs of health problems
Posted by Heather Dugdale at 1:39 PM 0 comments
Alzheimer's: Managing sleep problems
Posted by Heather Dugdale at 1:36 PM 0 comments
An organization for huntington’s disease awareness
Posted by Heather Dugdale at 1:20 PM 0 comments
Tuesday, November 17, 2009
Meds need a Review/ Getting sicker
Posted by Heather Dugdale at 6:44 PM 0 comments
Ariel receives the medal from the Honourable Daved C. Onley, Lieutenant Governor of Ontario and Michael Chen, Minister of Citizenshi
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.
Posted by Heather Dugdale at 6:29 PM 0 comments
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.
"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.
Posted by Heather Dugdale at 1:12 PM 0 comments
Monday, November 16, 2009
Relay For Life early bird registration is now open/ Trevor in Nursing School
Posted by Heather Dugdale at 7:31 PM 0 comments
Friday, November 13, 2009
Top Health Blog for 2 years in a Row
Posted by Heather Dugdale at 10:58 AM 0 comments
Thursday, November 12, 2009
HDSA's Inaugural Caregiver's Corner Webinar!
Posted by Heather Dugdale at 6:21 PM 0 comments
Cranbrook tomarrow/Demintia Ward
Posted by Heather Dugdale at 5:38 PM 0 comments
Wednesday, November 11, 2009
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!
Posted by Heather Dugdale at 7:47 PM 0 comments
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.
Posted by Heather Dugdale at 7:42 PM 0 comments
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.
Posted by Heather Dugdale at 7:15 PM 0 comments
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.
Posted by Heather Dugdale at 2:13 PM 0 comments
WEAREHD.ORG 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!
Posted by Heather Dugdale at 2:06 PM 0 comments
Happy Remembrance Day
Posted by Heather Dugdale at 1:53 PM 0 comments
Tuesday, November 10, 2009
Stem Cells in China
Posted by Heather Dugdale at 11:29 AM 1 comments
Monday, November 9, 2009
"Stigma, Secrecy and Medical History: What Can We Learn from Huntington's Disease?"
Posted by Heather Dugdale at 8:11 PM 0 comments
Had a Mountain Goat Good Time
Posted by Heather Dugdale at 7:47 PM 0 comments
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
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
Posted by Heather Dugdale at 7:04 PM 0 comments
There is a very pressing need to frankly discuss one of the most debilitating symptoms in the neuropsychiatric sequelae of “softer”
Posted by Heather Dugdale at 11:15 AM 0 comments
New gene therapy halts 2 boys' rare brain disease
Posted by Heather Dugdale at 11:10 AM 0 comments
Sibling researchers on Huntington's disease to speak at UTSA Nov. 10-11
Posted by Heather Dugdale at 10:56 AM 0 comments
Thursday, November 5, 2009
Radium Tomorrow
Posted by Heather Dugdale at 5:22 PM 0 comments
Learning about HD – a child’s response
Posted by Heather Dugdale at 1:04 PM 0 comments
Wednesday, November 4, 2009
Family better
Posted by Heather Dugdale at 5:31 PM 0 comments
HDSA Events
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.
Posted by Heather Dugdale at 5:26 PM 0 comments
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.
Posted by Heather Dugdale at 3:25 PM 0 comments
Pre-Clinical Research Findings
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.
Posted by Heather Dugdale at 12:53 PM 0 comments
HD Study NeuroSearch
Posted by Heather Dugdale at 11:51 AM 0 comments
Tuesday, November 3, 2009
My family is getting better
Posted by Heather Dugdale at 1:13 PM 0 comments
Monday, November 2, 2009
New TAU Formulation May Slow Down Parkinson's, Alzheimer's And Huntington's Diseases
Posted by Heather Dugdale at 11:50 AM 0 comments
Boost Your Immunity
Posted by Heather Dugdale at 10:54 AM 0 comments
new documentary film that features HD
Posted by Heather Dugdale at 10:46 AM 0 comments
My whole family has H1N1
Posted by Heather Dugdale at 10:31 AM 0 comments
Friday, October 30, 2009
Donation based on the number of touchdowns scored by the San Diego Chargers
Posted by Heather Dugdale at 2:50 PM 0 comments
My Brother has Swine Flu
Posted by Heather Dugdale at 2:17 PM 0 comments
Thursday, October 29, 2009
My little Lucky has Pink eye
Posted by Heather Dugdale at 9:07 PM 0 comments
Successfully secured 50 co-sponsors in the U S. House of Representatives for the Huntington's Disease Parity Act of 2009 (HR 678.)
When passed, this important bill will revise the Social Security Administration's outdated criteria for determining disability for people with HD and remove the two-year waiting period to receive Medicare benefits after receiving Social Security disability benefits. Congratulations to all of the HDSA advocates who made this possible.
But the work is not done. While 50 co-sponsors in the House is a great achievement - there's still a way to go. As we now begin to seek a companion bill in the Senate, it is even more important that we continue to show momentum and add more co-sponsors to our important cause. (For a list of co-sponsors
If you have not yet reached out to your representative, please take a moment to contact your congressperson and urge them to sign on.
Help HDSA keep the pressure on our elected officials by supporting our advocacy efforts. A great way to celebrate this achievement and help the Huntington's Disease Parity Act of 2009 become law is to give a gift in honor of this achievement.
A generous $50 gift from you in recognition of reaching 50 co-sponsors will help us move this bill forward and make a real difference in the lives of many people affected by Huntington's Disease. To make a donation go to:
Thank you for raising your voice for the Huntington's Disease Parity Act of 2009 and supporting our commitment to Help for Today, Hope for Tomorrow for everyone affected by HD.
Sincerely,
Louise Vetter
Chief Executive Officer
Posted by Heather Dugdale at 2:51 PM 0 comments
Wednesday, October 28, 2009
Denial
Posted by Heather Dugdale at 7:55 PM 0 comments
HDSA Survey
Posted by Heather Dugdale at 2:40 PM 0 comments