HD Reach

We are excited to announce our next book, “The Elsewhere Express” Join us on July 7th as we discuss the first half!

"You can’t buy a ticket for the Elsewhere Express. Appearing only to those whose lives are adrift, it’s a magical train seeming to carry very rare and special cargo: a sense of purpose, peace, and belonging. Raya is one of those lost souls. She had dreamed of being a songwriter, but when her brother died, she gave up on her dream and started living his instead.

One day on the subway, as her thoughts wander, she’s swept off to the Elsewhere Express. There she meets Q, an intriguing artist who, like her, has lost his place in the world. Together they find a train full of wonders, from a boarding car that’s also a meadow to a dining car where passengers can picnic on lily pads to a bar where jellyfish and whales swim through pink clouds.

Over the course of their long, strange night on the train, they also discover that it harbors secrets—and danger: A mysterious stranger has stowed away and brought with him a dark, malignant magic that threatens to destroy the train. But in investigating the stowaway's identity, Raya also finds herself drawing closer to the ultimate question: What is her life's true purpose—and is it a destination the Elsewhere Express can take her to? "

📚📚📚 Any questions please reach out to Erika at [email protected] https://www.hdreach.org/community/events/bookclub.html

mailto:[email protected]

Y is for You 💙💜 You are the reason this work is possible. Your generosity helps HD Reach continue providing advocacy, education, outreach, and care to families impacted by Huntington's Disease.

During our Spring ADVOCACY Appeal, every donation will be matched dollar for dollar up to $30,000, doubling your impact for HD families across North Carolina: https://www.hdreach.org/support/spring-advocacy-match.html

Summer is here, and it's a great time to stock up on your favorite HD Reach gear.

Whether you're heading to the beach, traveling, or enjoying time with family and friends, HD Reach t-shirts, sweatshirts, stickers, and more are a simple way to help raise awareness for Huntington's disease. Every purchase supports HD Reach programs and services for individuals and families impacted by HD.

Shop now: https://shop.printyourcause.com/campaigns/HD-Reach

Thank you for helping us spread awareness and support the HD community.

TOMORROW! Join us at the Vanderbilt HD Educational Community Support Group. This group provides an opportunity for people who are living with and impacted by HD to learn from presenters and share experiences together.

The first hour will feature a speaker and will be followed by a breakout of two support groups: one is a casual catchup and the other is focused on the later stages of caregiving.

This support group is virtual only (via Teams).
https://www.hdreach.org/community/events/educational-speaker-hour.html

WINSTON-SALEM: Tomorrow there's a *NEW* spot for Lunch! Walk-ins are welcome, however please register if you can. If there are no signups, the event will be cancelled. Check HEYLO for updates! https://www.hdreach.org/community/events/ 💙💜

Thank you to Quail Haven Village in Pinehurst, NC for having UNC Care Navigator Latorius Adams and Erika yesterday to learn more about !

Where should we go next?

uniQure and U.S. Food and Drug Administration reach agreement on path forward for AMT 130!

This morning, uniQure announced that the 3 year data from the phase 1/2 trial CAN be used as the primary basis of a Biologics License Application (BLA) for accelerated approval. Also, the FDA will be seeking to work with uniQure on the confirmatory study design for a control; including alternative options instead of a sham procedure.

Your voices mattered and the FDA listened! Remember how much change we can continue to make as we band together and demand the change we hope to see.

We are always cautiously hopeful for trials to have benefit for our community. Now we can say we moved a mountain together getting us closer than we ever have been before. Change does happen and YOU all helped make it happen. uniQure will file the BLA in quarter 3 of 2026 and hopefully we now move forward with this exciting trial.

To our trial participants, our strangers who signed the petition, our scientists, doctors, advocacy groups, HD families- thank you for the sacrifices helping to get us closer and to believing that our HD community deserved to be heard.

https://uniqure.gcs-web.com/node/12796/pdf



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RDU: Cancelled tonight! We will see ya’ll July 22nd!

Check HEYLO for updates on all of our meetups! https://www.hdreach.org/community/events/ 💙💜