Wehaveaface

Wehaveaface Resources for Huntington’s Disease WeHaveAFace is an advocacy group for Huntington's disease and Juvenile Huntington's disease. Please be sure to listen in!

We began our mission in 2009 and retired the organization in 2023. However, WeHaveAFace still provides podcasts via Kevin Jess. Beginning December 2025, James Valvano (former creator of WeHaveAFace) will be launching - Hobbies 4 HD. Via this page, joined groups, and YouTube, he will be discussing how hobbies can bring relief to patients and families with Huntington's disease. Please subscribe to our YouTube channel: YouTube.com/wehaveaface

Thank you and

07/10/2026

Roche has announced the discontinuation of huntingtin-lowering drugs tominersen and RG6496 based on independent, data-driven decisions. The Phase 2 study GENERATION HD2 evaluated tominersen in Huntington disease (HD) and enrolled 301 participants across 15 countries, including Canada. The POINT-HD study, a first-in-human study of RG6496 in HD, was open internationally, with planned expansion into Canada. This study will no longer take place.

Although these programs have come to an end, they have answered important scientific questions that will guide future research, and they do not take away from other promising approaches being pursued to develop treatments for HD.

We recognize that this may still be disappointing news and encourage you to access support. Please reach out to your Family Services team member or, if you’re new to HSC, please fill out our online form: https://contactme.cloud/form/huntingtonsociety

Learn more by reading the community letter and HDBuzz's summary article here: https://www.huntingtonsociety.ca/news/

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