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Dear Friend of EHDN, Each year, the HD community comes together to celebrate and express gratitude for the unique collaboration between HD families, clinicians, and scientists that continues to drive progress in Huntington’s disease research and care. We are delighted to share details of HD Gratitude Day 2026 with a letter from Jimmy Pollard and Ignacio Muñoz-Sanjuán. The live stream from Venezuela will take place on Sunday, 22 March at 09:00 PST / 12:00 EST / 16:00 GMT / 17:00 CET. Registration details can be found below. We hope you will be able to join us. Kind regards, EHDN Central Coordination |
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Gratitude Day — celebrating the partnership between families, scientists and clinical professionals to advance treatments for Huntington’s disease
We’re inviting you to join us in the worldwide social media campaign, “Huntington’s Gratitude Day.” It’s coming up on Monday, March 23rd.
The Gratitude is for the partnership between families, scientists and allied health professionals in the great quest for effective treatments for HD. You, your staff members and allies are all partners.
Families thank scientists all the time! Scientists thank families every chance they get. However, this is a day for all of us to recognize our partnership together. After all, it’s unique in science.
The first milestone in our partnership was the US/Venezuela Huntington’s Disease Collaborative Research Group. Nancy Wexler’s team traveled to the families living in extreme poverty in the villages along Lake Maracaibo, villages which still have the highest prevalence of HD in the world. They willingly gave samples of their blood, skin and more, in the hope that they could, as Marjorie Guthrie used to say, “do something about HD”.
That partnership and those contributions, later with those of other families and scientists, led to the discovery of the HD gene in 1993, March 23rd. That’s why we do it on that anniversary every year.
Today, we’re all partners. Some of us work at home, others work in labs, clinics, offices, at a desk, a lab bench or operating an MRI machine. One may be walking their own HD road or caring for a loved one; a healthcare professional, association employee, or a volunteer in a research study or organizing an event. Perhaps they’re a participant in a clinical trial, brain donation, Enroll-HD, a walk, a banquet, a survey, a support group or have jumped from an airplane to raise funds. Gratitude Day is not to thank each other, rather it’s a day to recognize, appreciate and call attention to our partnership, its achievements that have brought us this far, and the certainty that it’s the foundation upon which our future advances and discoveries will be built.
Today, our partners in those Venezuelan villages remain living with HD in extreme poverty under very vulnerable conditions. They remain partners, too, celebrating Gratitude Day in their villages with candlelight vigils for loved ones lost to HD, and a Kids’ Lab Day which virtually connects them with, this year, Joe Cheer’s University of Maryland Medical School neuroscience lab, inspiring them to see themselves in science.
We invite you to join us this year and participate by taking pictures of yourself, your central or regional office staff, your chapters, ambassadors, or families doing “H-Hands”. You might gather around a lab bench, an office, lab, or clinic together and take a picture of your team all doing H-Hands. We encourage creativity and cleverness! And we ask you to distribute this as widely as possible within your agency.
“H-Hands” is our hand sign which symbolizes family/scientist partnership and Gratitude Day. It’s the traditional “heart hands” sign, with both index fingers extended upwards, forming a rough “H,” which stands for Huntington’s, Humanity and Hope. They are the pillars of both our work at Factor-H and everything within the partnership in the quest for a cure. We use the hashtag #hdgratitude day. The picture attached will show you H-Hands more clearly!
Gratitude Day was born four years ago from the collaboration of Factor-H staff in South America and volunteers around the world. It continues to grow, because our partnership is too important to take for granted. It’s responsible for all we’ve achieved to date and is the foundation for the future. That why we do it grassroots, without sponsors, virally on social media. We are truly One on HD Gratitude Day!
We’re excited to be livestreaming the events from Venezuela on Sunday, March 22 | 9:00 AM PST | 12:00 PM EST| 16:00 PM GMT | 17:00 PM CET. It’s always a highlight of Gratitude Day!
Register to join us via the official Zoom link: Zoom Link
Also, donations to Factor-H can be made through our website, www.factor-h.org. Every contribution directly funds health services, medications, youth programs, and essential support for families who, as initial partners in the great quest, contributed so much to science — and who still need us.
If we can assist in any way, please don’t hesitate to call us.
We hope you’ll be part of it again this year.
Partners,
Jimmy Pollard & Ignacio Munoz-Sanjuan
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