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Huntington's Disease Society of America
США
Добавлен 14 июл 2014
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call 1-800-345-HDSA.
OPENING CEREMONY | 39th Annual #HDSAConvention
Join Teresa Srajer, Chair of the HDSA Board of Trustees, and Louise Vetter, HDSA President & CEO and Dr. Thomas Bird, as they deliver the opening remarks for the 39th Annual HDSA Convention held in Spokane, WA.
Discover the latest updates, insights, and future directions of the Huntington's Disease Society of America (HDSA) at this pivotal event.
Don't forget to like, comment, and subscribe for more updates from HDSA!
#HDSA #Huntingtonsdisease #HDSAConvention #Spokane #familyiseverything
Discover the latest updates, insights, and future directions of the Huntington's Disease Society of America (HDSA) at this pivotal event.
Don't forget to like, comment, and subscribe for more updates from HDSA!
#HDSA #Huntingtonsdisease #HDSAConvention #Spokane #familyiseverything
Просмотров: 106
Видео
Social Security Update: Reducing Work History
Просмотров 4512 часов назад
Welcome to our channel! In this episode of Disability Tips, we delve into the into the latest update by the Social Security Administration and how it effects individuals with Huntington's disease. Don't forget to like, share, and subscribe for more empowering content! #DisabilityTips #Inclusion #enddiscrimination Visit hdsa.org/disability-tips/disa... for links to resources.
Power HD
Просмотров 15821 день назад
Learn about Power HD and how to participate. #huntingtonsdisease #PowerHD #familyiseverything
2024 HDSA's National Youth Alliance- Convention Video
Просмотров 220Месяц назад
For more info about #HuntingtonsDisease & HDSA's National Youth Alliance please visit www.HDSA.org/NYA
Disability Tips: The Disability Umbrella
Просмотров 2153 месяца назад
One of the biggest misconceptions about disability in the context of Huntington’s disease is that it is just one thing: a benefit. Disability benefits are very important benefits for the HD community, but they are just one section of the larger disability umbrella. All of the sections of Disability Umbrella are important, especially in the context of HD. Visit hdsa.org/disability-tips/the-disab...
Disability Tips: Discrimination in HD
Просмотров 2974 месяца назад
Welcome to our channel! In this episode of Disability Tips, we delve into the crucial issue of discrimination faced by individuals with Huntington's disease. Together, let's strive for a more inclusive and equitable society. Don't forget to like, share, and subscribe for more empowering content! #DisabilityTips #Inclusion #enddiscrimination Visit hdsa.org/disability-tips/disabled-not-unable-dea...
HDSA invites uniQure to discuss the latest data from HD-GeneTRX studies of AMT-130
Просмотров 9864 месяца назад
Join HDSA for a research webinar in which uniQure will present the latest update about their study of HD gene therapy AMT-130 in the ongoing HD-GeneTRX trial, and answer community questions. Speakers include Dr. Ed Wild, FRCP, Professor of Neurology at University College London, and Walid Abi-Saab, MD, Chief Medical Officer at uniQure.
Neurocrine Biosciences, Inc. Discusses New Treatment for Chorea Associated with Huntington’s Disease
Просмотров 4755 месяцев назад
Neurocrine Biosciences, Inc. discusses their new medication recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of chorea associated with HD in adults. Please see full prescribing information at www.neurocrine.com/assets/2023/09/INGREZZA-Full-Prescribing-Information_PI_Approved-202309.pdf , including Boxed Warning.
Happy Holidays from Louise Vetter
Просмотров 3446 месяцев назад
HDSA's President & CEO Louise Vetter sends a special holiday message to the #HuntingtonsDisease community. HAPPY HOLIDAYS!
Legal Planning and HD: Estate Planning
Просмотров 2239 месяцев назад
Legal Planning and HD: Estate Planning
Leaving a Legacy: Brain Donation for Huntington's Disease Research
Просмотров 72510 месяцев назад
Brain donation is an important option to consider when thinking about your legacy, too. A brain donation is an invaluable gift that makes a lasting scientific impact for generations to come and is essential to enhance our understanding of HD. Registering to donate is non-binding, and can help family members prepare. Read more about brain donation on HDSA’s website - hdsa.org/find-help/healthcar...
38th Annual #HDSAConvention Highlights - New Orleans, LA (2023)
Просмотров 85711 месяцев назад
On June 1-3, 2023, the Huntington's Disease Society of America brought the global #HuntingtonsDisease community together in New Orleans, Louisiana at the 38th Annual HDSA Convention. Learn more at hdsa.org/about-hdsa/annual-convention/ #LetsTalkAboutHD #HDSAFamily
HDSA Volunteer Awards
Просмотров 12111 месяцев назад
To learn more about #HuntingtonsDisease, please visit HDSA.org. #LetsTalkAboutHD #HDSAFamily #HDSAConvention #StrongerTogether #OneHDSA
HDSA and RareX
Просмотров 25111 месяцев назад
To learn more about #HuntingtonsDisease, please visit HDSA.org. #LetsTalkAboutHD #HDSAFamily #HDSAConvention #StrongerTogether #OneHDSA
38th Annual HDSA Convention Clinical Trials Showcase
Просмотров 30611 месяцев назад
38th Annual HDSA Convention Clinical Trials Showcase
What Can A Speech Language Pathologist
Просмотров 18811 месяцев назад
What Can A Speech Language Pathologist
Behavioral Symptoms - How to Handle Difficult Behavior in Huntington’s Disease - It Takes a Village
Просмотров 813Год назад
Behavioral Symptoms - How to Handle Difficult Behavior in Huntington’s Disease - It Takes a Village
Let’s Talk About Anxiety: Practical Tips for Managing Anxiety With and Without HD
Просмотров 228Год назад
Let’s Talk About Anxiety: Practical Tips for Managing Anxiety With and Without HD
Very informative
How can anybody hate people who created these people? They are still Gods children and just because they suffer does not mean they do not bring immense meaning and joy into the lives of those privileged enough to know them. My husbands family is full of this disease and they have brought many people to Jesus through their childlike faith and love.
I have it and forgot it was in May. Missed it🤣much love Drew❤️🙏
Poor little sweetheart. When they said that she, at the age of 11 or 12 doesn't have any friends, I realized how lonely she must be. I always thought every little girl had a best friend.
This is Steve Gottlieb, friend of Jaime
I so admire them for doing the testing. When my grandmother was diagnosed with this it was too late not to have children. Thank God my mom didn't have it.
I don't know how I got so lucky. My grandmother had this terrible disease. My mom was her oldest child. None of her children had Huntingtons . Since my mother didn't have it I would never have it. My grandmother's brother and sisters weren't so lucky. Most of the children born to them had it. I had a 2nd cousin who got the test at a young age and discovered she was positive for the gene. She shut down and stopped living after that. I wish she would have never gotten the test!
Good job, captured a great spirit of hope and determination, love it
🙏🏽🙏🏽🙏🏽 your a great actor luv
0:00 I made the flying thing
I have only so much sympathy for those living in denial when so much is at stake for this atrocious disease.
Thnk you for sharing this information!
Huntingtons is a combination of the worse cases of ALS and Parkinson’s along with mental illness.
I promise you this - I will press on for prioritized consideration that leads to a Huntingtons disease cure. This cure disease needs to be taken down. Thank you for sharing how beautiful and important your mother was. IN HER MEMORY AND HER SISTERS NAME TOO - we need to find a cure TODAY.
It's Scott Porter from Friday night lights!
I just started using this piece in the gym, I like how it makes me sweat so I knew it was doing something, but I Googled searched hand bike not knowing the proper name. I rotate doing 4 separate exercises on it.
Minecraft Story Mode?
My son-in-law has it he is 54 it’s absolutely heartbreaking
Makenzie you are beautiful
I’m praying for it girl 🙏🏽💖 For you.
Should be free to those below certain income levels! Like many other aspects of US medicine, the poor just make do without.
this wasnt funny
actually it is kind of funny
I knew a woman whose daughter inherited it from her dad she was finally diagnosed at 12 she was 21 when she passed. This is dear to my heart because her onset was about 6 years old when the symptoms started.
Im of a HD Family and in risk too. Thank tou. Gracias. Your words healed me
So amazing willing to fight for others but won’t help get the medical information of your pawpaw for his child that he tossed aside.
The flash
Hi, What is the latest update on this drug , or any other method ??
Katie/Abby auditioned for Max? That’s kind of funny. Max is my favourite character and Abby is my second favourite character. Also, I can’t picture anyone else in the role of Max other than Sara. Sara IS Max.
I can’t stop looking at Sara Waisglass!! She’s so gorgeous!!
do i hear lukas
Because that's the voice actor for him
# Huntingtons Disease.
This is the worst disease of all. This young man is blessed by having a kind and loving family who give him wonderful care. I pray for all those who suffer from this horrible plague and for their caregivers.
It really isn't fair to ask children to watch or to provide care for parents who have HD. Why? Because these kids are abused by the parent. Regardless of whether "it is the disease" it is still abuse of a child or teenager. What is even worse is that having been cheated of their childhoods, they will go on to have no future. Most of the those kids who then have HD are caring for their parent, until they themselves are affected by the disease. That means no time of freedom in their lives. If the partner cannot care for the HD patient, then the patient should be placed in a care home. Kids can visit--everyday if they want to. They have a shortened life. They should be able to enjoy that short life.
Most disloyal award goes to white people
brava
Imagine your whole family being plagued by this disease
Thank you for remaining positive! Thank you for sharing your love story. My thoughts and compassion is with you as you journey through HD.
Isn't the child possibly a carrier, even if tests embryu tests negative?
No. You don’t carry it, you either have the disease or you don’t.
No. It’s an autosomal dominant pattern of inheritance
Is there any update on this family? I can't believe what a tower of love and strength this woman is. Very, very moving.
Sadly, Alyson Marie O'Donnell passed on 4-23-2023. You can search for the obituary.
How old us she when she died@@RockinStacy
@@voltes5269 18
🤞
I care for my ex, the father of my two boys. It is cruel when this disease hits such young people, at least our gene appears to hit later in life.
When I watched this I was shocked. I can’t imagine how she felt finding out her husband had HD after all the work her father had done.
Braves
Wonder why Toni kept cutting in and out.
He really is "Super Mayor."
Hold up he’s heimdall and the flash wtf
dude i know, he was great as the flash 😮
I wish you, Marianna Palka, all the best. It's really sad that a disease that has been known for so long still has no cure. I wish the cure could be found so that you and everyone else with this diagnosis can get help.
Flaaaaash
I can't not hear lukas, it's crazy.
Stop reproducing