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Huntington's Disease hope for cure everyday

Scottyskis2

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Joined
Dec 17, 2022
Messages
433
Points
28
#LetsTalkAboutHD with Amy-Jo Adams
“You are not alone! There is support out there, and hopefully, through blogging, I hope to inspire and educate others about #HuntingtonsDisease."
READ HERE: http://nya.hdsa.org/news/106

#HDSANYA #HDSA
 

Scottyskis2

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Dec 17, 2022
Messages
433
Points
28
Why we huntingdon disease need a cure yesterday
 

Scottyskis2

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Dec 17, 2022
Messages
433
Points
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We need to cure this horrible illness adverse oq1 1 to its usually the money unfortunately that stops medical research and treatment trials but for HD more chances on recent few years its be better ways to get HD more manageable than it is now
 

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Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
433
Points
28
SCHOLARSHIPS AVAILABLE!
HDSA offers multiple scholarships to help you and your family attend the 38th Annual #HDSAConvention. Whether you are a first-time HDSA Convention attendee, a member of HDSA's National Youth Alliance, or a resident of Louisiana or New Jersey, we will help you get to New Orleans!

Learn more & apply at https://hdsa.org/about-hdsa/annual-convention/

#LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily
 

Scottyskis2

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Dec 17, 2022
Messages
433
Points
28
The symptoms of #HuntingtonsDisease can vary a lot from person to person, but they usually include: Personality changes, mood swings & depression, forgetfulness & impaired judgment, unsteady gait & involuntary movements (chorea), slurred speech, difficulty in swallowing & significant weight loss.

To learn more, please visit HDSA.org.

#LetsTalkAboutHD #HDSAFamily
 

Scottyskis2

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Joined
Dec 17, 2022
Messages
433
Points
28
From huntingdon disease Facebook group people talk about the ways it might be for them.

""I'm honored to have the amazing Savannah Wilkes on the show this week. We will be discussing her HD journey, and how she's using social media to talk about life and loss. Make sure to tune in on Thursday at 4 PM EST."
 

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Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
433
Points
28
Another person passing from HD sad I hope the world ends this fucken disease with medicine that works for us HD patients but doubt will happen unfortunately in my life time.
""My condolences to the Hilty family. Nancy Brenner Hilty passed away peacefully on January 15th at home, surrounded by her loving family. She died after a long battle with Huntington’s Disease that affected her life drastically over the past ten years."""
😓😓😓
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
433
Points
28
Introducing The HDSA Podcast!
The HDSA Podcast, hosted by Louise Vetter, gives listeners an opportunity to meet members of the #HuntingtonsDisease community and get a behind-the-scenes look at the Huntington’s Disease Society of America every month.

Click here to listen: https://hdsa.org/podcast/

#LetsTalkAboutHD #HDSAFamily
"Make sure to tune in this Thursday at 4 pm EST to hear Abby share how she's learning to accept her new normal with HD."
 

Scottyskis2

Active member
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Dec 17, 2022
Messages
433
Points
28

Juvenile Huntington's disease here is much much worse than what I have fhia fucken disease needs a cure yesterday
 

JimG.

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Oct 29, 2004
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Location
Hopewell Jct., NY
Visited and ate lunch with my friend Scotty yesterday.

He's strong and is hanging in there. But HD really sucks.
 

Scottyskis2

Active member
Joined
Dec 17, 2022
Messages
433
Points
28
"Tomorrow is the big day!! Tomorrow is our FDA Patient Listening Session for Juvenile Huntington's Disease. I've been dreaming of this day for such a long time. I'm nervous, and excited and anxious.... I probably won't sleep well tonight, but I'm ready for this!! We got this! 😎 Big changes are going to happen in our JHD community and I'm honored & proud to be joining these 6 other amazing mothers to help he a part of that change. I also want to give a huge THANK YOU to Help 4 HD International for organizing tomorrow's meeting and for all you do for our kids and our JHD Community 💜 #JuvenileHuntingtonsDisease #togetherwearestronger #jhdwarrior"""
 

Scottyskis2

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Joined
Dec 17, 2022
Messages
433
Points
28
""
Thank you, Help 4 HD International for allowing me to sit in on a FDA Patient Session for Juvenile Huntington’s Disease today.

For those who don’t know, clinical trials for Huntington’s Disease are not currently offered for Juvenile HD because of the legalities behind it. They are left out for being minors, despite the fact they have a terminal, rapidly progressive disease.

I had the honor to witness so many strong and brave JHD mamas, like Autumn Tabor, Melissa Patton Walschburger, and others share their stories with the FDA in hopes for equal opportunity for access to trials and studies for JHD patients.

My sweet Bre: I wish you were still here, but I will continue to advocate for you despite the fact you’re no longer here with us physically, but always spiritually.

Thank you again to Help4HD for this opportunity and to the FDA for truly being willing to listen to our pleads for help and hope.
💜"
Another person who loses their little girl to this horrible illness
 
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