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HDSA's National Youth Alliance

@hdsa_nya

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Supporting and connecting those impacted by #HD 💙 and #JOHD 💜

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One week ago, young people and volunteers from across North America came together for an unforgettable experience. We laughed, cried, grieved, healed, and embraced. We all left knowing one simple truth…no one is alone!

Thank you for all who supported the HDYO North American Camp! More photos to come in our Facebook page. Stay tuned!

@hd_reach @hdsa_nya @help4hdi @hdreachgameoverhd

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Wowza! What an amazing first couple of days at @hdyofeed North American Camp! We can’t wait for what the rest of this week as we grapple with the different obstacles of #huntingtonsdisease while building a safe community for young people.

Thank you to our sponsors: Novartis, Roche, Neurocrine Biosciences, uniQure and the Griffin Foundation!

Huge thanks to our partners: @hdsa_nya @hd_reach @help4hdi

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this week i attended my first huntingtons disease convention. i don’t really talk about HD often, but it affects my family’s life in a major way. i went fully alone and was so scared to be there but i also knew i was as ready as id ever be and i needed it. i knew none of these people just a few days ago and i already call them my family. i didn’t know a love and support like this existed. it breaks my damn heart knowing they also are deeply effected by HD in many different ways and i wish i could take it away from all of them, but it brought me an incredible sense of comfort knowing people understand me in a way i have never felt elsewhere. i am so grateful for this week and these people. i already don’t know what i would do without them. i love you all and FUCK HD.

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I want to give a special thank you to the @hdsa_nya for giving me and 40+ other young people scholarships to attend convention this year. This experience has truly been life changing, and I’m so grateful I got the opportunity to be there.

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What’s Age Got To Do With It? 🤔

In the Huntington’s disease community, we often approach support and education based on demographics—especially age. But age is just one part of a much bigger picture. Every person’s experience is unique, shaped by their family, circumstances, challenges, and journey.

James O’Connor from the @hdauk and Grant Walker from the @scottishhuntingtons join Jenna Heilman from HDYO to talk about the complexities of age for support, education and awareness.

Watch complete video - link to playlist in bio!

#youngadult #HDYO #huntingtonsdisease #support

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🌍 Where will we see you next?

HDYO is on the move! Over the coming months, we’ll be traveling across the globe to host programs, raise awareness, and advocate for young people impacted by Huntington’s disease.

Whether we’re meeting families, connecting with communities, speaking at events, or amplifying young voices, we’re committed to making sure young people affected by HD are seen, heard, and supported.

📍 Check out where we’ll be next—we’d love to see you there!

#HDYO #HuntingtonsDisease #YouthVoice #HDCommunity #advocacy

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That's the face of a girl who just found out we're road tripping to Salt Lake City at the end of July, for @hdsa_nya Retreat!! Can't wait to see our Ohana!!!💜💙💜💙
#JuvenileHuntingtonsDisease #HuntingtonsDisease #HDAwarenessMonth #jhdwarrior

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Have questions about testing, caregiving, growing up in an HD family, family planning and more? Everyone could use someone who just gets it, especially who understands your experiences with #huntingtonsdisease. In the US, the @hdsa_nya and HDYO have joined forces for the Youth and Young Adult Mentorship program. Find out more - link in bio or scan QR code.

#support #hope #raredisease #community

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Before the cars, before the crowds…
it’s always been about the people.

These are just a few of the faces from the @hdsa_nya
the next generation showing up, stepping up, and carrying this fight forward.

Some of them volunteered. Some voluntold.
Some of them organized.
All of them made this community stronger.

FastTrackPGH has never just been an event
it’s been a place where people find purpose, friendship, and a reason to keep pushing.

💙

18 years later… we’re still showing up.

#FlashbackFriday
#FastTrackPGH
@hdsanational
#NationalYouthAlliance
#ifightwithmyfriendsformyfriends

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Did you miss the camp application deadline? 😬 Don't worry, we've got you covered! Apply now through the link in bio 👉.

We've extended the deadline while we finalize offers.

#huntingtonsdisease #hdyocamp #hope #hdyo

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