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HDSA Greater NY Chapter

@hdsanyc

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Greater New York Chapter. Volunteer-led. Bringing awareness to Huntington's Disease in NYC. #hdsanyc

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#arrfyl #leadwithlove #backtolife
#inspiration #embrace the struggle

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Today is International Huntington’s Disease Awareness Day which happens to fall on the same day my father lost his battle with HD

That’s why HDSA’s Celebration of Hope means so much to me. Serving on the board of @hdsanyc is my way of honoring my dad and supporting families impacted by this disease

To everyone who attended, donated, and supported us thank you. Your love and generosity mean more than you know, and they keep hope alive for the HD community💙

A special thank you to @brianpcreative for being our amazing personal photographer!!!!

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🚨 Big update on something close to our hearts - Huntington’s Disease (HD). A rare, genetic brain disorder that impacts movement, thinking, and behavior.

There’s been real momentum in research toward a cure this past year — but there’s still more work to do. We’re excited to be getting even more involved with HDSA and helping push this fight forward 💙

Join us May 6th for the annual Celebration of Hope — a night to raise awareness, support the mission, and be part of something truly meaningful. Let’s come together and help smash this disease for good.

#HDSA #CelebrationOfHope #EndHD #SmashForACure

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Here’s what you can do TODAY!
Email the letter to your local TV stations and newspapers! The more letters we have the more likely they are to publish!

Download the pre-written letter here: https://www.votervoice.net/mobile/HDSA/News#/Blog/8626 HDSA.org/dayofaction
Emails for MILWAUKEE AREA:
Wisntvnews@hearst.com news@tmj4.com Fox6news@fox6now.com news@cbs58.com letters@journalsentinel.com I used ChatGPT, and this took less than 10 minutes!!!!
Message me with any questions!
THANK YOU!!!💙💙💙💙

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@matt_ellison_hdyo and @jennaheilman talk all things North American Camp! This free program offers young people a unique life-changing experience while also having fun. Applications close end of day this Sunday, March 15! Find out more at HDYO.org!

Camp partners at @help4hdi @hd_reach @hdsa_nya @ypahdfeed

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CAMP APPLICATIONS CLOSE IN 6 WEEKS! Join HDYO North American Camp for an unforgettable experience where you can connect with peers and make lifelong memories! 💥

Apply NOW! 🔗 in bio

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We need Hope! 💜 #huntingtonsdisease #awareness #fda #amt130 #uniqure

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Check out this comprehensive 2025 Update on Huntington’s disease. Spoiler alert: In 2025 we learned something crucial about how somatic mutations in HD are crucially related to disease manifestation. Huntington’s disease is a genetic brain disorder caused by a repeating DNA code (CAG) that gradually disrupts movement, thinking and behavior. Donaldson and colleagues describe in a new paper in Nature Reviews Neurology how Huntington’s disease biology is being reframed and where new therapeutic opportunities are emerging.
Key points:
-Somatic expansion of the CAG repeat in brain cells is now viewed as a major driver of disease onset and progression.
- DNA repair pathways strongly influence when symptoms begin and how fast the disease advances.
- Targeting repeat expansion may complement huntingtin lowering approaches for longer lasting benefit.
My take: This review marks a real shift in how we think about Huntington’s disease. It is not only about a toxic protein but also about unstable DNA that keeps changing over time. That insight opens doors to earlier and potentially broader interventions across repeat expansion diseases. 5 points that resonated w/ me: 1- Disease progression appears to be shaped at the DNA level, not just the protein level. 2- Small changes in DNA repair can meaningfully alter when symptoms begin for folks. 3- Slowing somatic repeat expansion could delay disease even before the symptoms emerge. 4- Combining DNA targeted strategies w/ huntingtin lowering may be more effective than either approach alone. 5- Biomarkers that track repeat expansion will be essential to move these therapies forward for health care providers and for persons w/ disease.
https://www.nature.com/articles/s41582-025-01159-7 #michaelokun #fixelinstitute #huntingtonsdiseaseawareness

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We’re back! HDYO North American Camp is coming back in August 2026!

Who is eligible?
- young people impacted by #huntingtonsdisease
- living in United States, Canada and Puerto Rico
- ages 16-25

Learn more at HDYO.ORG!

*HDYO reserved the right to make application decisions based on group dynamics and funding limitations
*HDYO Camp will be held in English

#gathering #raredisease #hdyo

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Striking new data were presented from the AMT-130 gene therapy program for Huntington’s disease at the Movement Disorders Society meeting in Hawaii this morning, Thanks to Dr. Deborah Hall from Rush for bringing us the breaking data beyond just the press release. This investigational therapy used an adeno-associated viral vector to deliver a micro-RNA designed to silence the mutant huntingtin gene directly in the striatum, aiming to slow or halt the underlying neurodegenerative process. In the phase 1/2 study, persons receiving the high dose of AMT-130 showed a 75% reduction in disease progression at 36 months, measured by the composite Unified Huntington’s Disease Rating Scale (cUHDRS) compared to a matched external control from the ENROLL-HD database. The mean decline in cUHDRS was only −0.38 points in treated participants versus −1.52 in controls (p = 0.003), indicating possible slowing of motor, cognitive and functional decline. The trial enrolled individuals w very early-stage Huntington’s disease (Total Functional Capacity 9–13), ages 25–65, and continued them w/ long-term follow-up. These early findings suggested that a gene silencing infusion into the brain may modify disease trajectory, a potentially important step forward for Huntington’s. Dr. Lorraine Kalia from the University of Toronto gave an enlightening summary of the presentation in the plenary session including the challenges of the approach: sham data/comparisons, the use of very early person's w/ disease and interpretation of the 'clinical meaningfulness' of the outcome. She stressed that what they accomplished w/ the gene therapy from a biological standpoint was quite significant. We await the publication of the peer-reviewed paper. #michaelokun #fixelinstitute #huntington #huntingtonsdiseaseawareness

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We're looking for mentors! The Youth and Young Adult Mentorship program, led by @hdsa_nya and HDYO, provides peer support in the US. Learn more by scanning the QR code!

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