On March 23rd, 1993, scientists announced the discovery of the gene that causes Huntington’s Disease (HD). The announcement, after decades of research, made evident the partnership of ‘families living with HD’ and the ‘scientists working on their behalf’. This milestone and partnership were celebrated at homes, laboratories, and clinics.
Around the world, many HD families contributed their DNA samples to the research teams, and this enabled to the discovery of the gene. Hundreds of families from Venezuela played a significant role in this achievement.
Thirty years later, the discovery of the gene remains the primary milestone in our great quest to find effective treatments for HD. It symbolizes the progress our unique partnership has achieved. It offers hope that other significant milestones are at hand.
March 23rd was a day to celebrate in 1993 and still is a date to celebrate annually. It’s a day to recognize, reflect upon and express our collective gratitude for our partnership.
March 23rd is a day to show our gratitude to the families from Venezuela by giving something back. They need our acknowledgement of their contributions, our appreciation, and our financial support, because many of the families who contributed still live in poverty. They do not have access to the genetic test. Medical care and access to HD medications is largely absent, and many patients die of malnutrition. We can do better for them.
March 23rd – “HD Gratitude Day”
Organized by Factor-H, a non-profit organization based in Los Angeles, and today the only organization directly helping the more than 500 identified families living in poverty in the Maracaibo region. All donations to Factor-H go directly to supporting their care and aiding patients, caregivers, and at-risk children, by working closely with Venezuelan organizations.
Factor-H celebrates the Venezuelan families and seeks to highlight the significant, historic role which they played initially with the U.S.-Venezuela Collaborative Research Project beginning in 1979. See the Gratitude Day page.
HD Gratitude Day is a community-wide event to celebrate and reflect on our ongoing partnership. We’re asking individuals and their families, allied healthcare professionals, and staff in clinics, laboratories, and offices all around the world to participate in any number of ways described below.
As a member of our community, organized around care, research and services for those living with HD, we’re asking you to join us and celebrate HD Gratitude Day.
You can participate in several ways…
• Share a photo of your team with the Gratitude Day logo and/or Gratitude Day hand sign via social media and tag Factor-H: https://www.instagram.com/factorh_org/ and https://www.facebook.com/factorh.org
• Post a short video of your family, lab, office, or clinic staff with a “Gratitude Day” sign telling what our partnership means to you, and tag Factor-H
• Write a message, poem or even a song about our unique partnership and send it to us
• Place a support frame on your social media profiles to promote Gratitude Day and make the community aware of the need for donations
• Recognize the date and needs at your in-person or virtual events, such as staff meetings, support groups or conferences, anything to spread the word.
• Organize an event within our community celebrating our partnership and share it with us.
• Post examples of how our partnership has touched your life or career.
• Please donate to Factor-H at www.Factor-H.org
As Gratitude Day approaches, would you like to participate?
Please contact any one of us who are organizing it:
Asunción Martinez – email@example.com
Cristina Ferreira – firstname.lastname@example.org
Katrin Barth – email@example.com
Jimmy Pollard – firstname.lastname@example.org
Ignacio Muñoz-Sanjuán – email@example.com
We look forward to hearing from you! And thank you!