Summary
- This Week in HD Research: Discovery of the HD Gene and HD Gratitude Day
- Paid Research Survey Participation Opportunity: Rare Patient Voice
- Online Survey: “Exploring the Intersection of Fashion and Identity for People with Huntington’s Disease”
This Week in HD Research: Discovery of the HD Gene and HD Gratitude Day
On March 26th, 1993, the discovery of the CAG repeat mutation and location of the gene that causes Huntington’s disease was published by the Huntington’s Disease Collaborative Research Group, an assembly of nearly sixty scientists across six institutions. Integral to this discovery was a huge community of families affected by HD in the Lake Maracaibo region of Venezuela who donated their blood and their time in an extraordinary collaboration that allowed researchers to study their genes and work toward this milestone.
The 20-year Venezuela study was championed by Nancy Wexler, and paved the way for human clinical trials and the development of therapies to decrease levels of harmful huntingtin protein or alter huntingtin expression. On March 23rd, we commemorate the remarkable contributions of the individuals and families who made this discovery possible and who opened the doors for the development of treatments for HD that will benefit affected people across the world. HD Gratitude Day is a global day to celebrate these people and to support their descendants who live with HD. To learn more about how to show your gratitude, click here.
Online Survey: Rare Patient Voice
Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through paid surveys and interviews to improve medical products and services. There is a current research opportunity for Huntington’s Disease patients and caregivers living within the United States, involving a 25 minute online survey, with $50 compensation. To participate, you will need to follow this link to sign up with Rare Patient Voice: https://rarepatientvoice.com/hdsa/. Then you will receive an email invite to a screening survey to see if you qualify. You may also receive emails in the future about other opportunities to participate.
Online Survey: “Exploring the Intersection of Fashion and Identity for People with Huntington’s Disease”
An occupational therapy graduate student at Duke University has partnered with HD Reach to explore innovative adaptive clothing solutions designed to optimize the quality of life for individuals living with HD. The project, “Exploring the Intersection of Fashion and Identity for People with Huntington’s Disease,” aims to produce a piece of clothing or accessory prototype for those with HD that will address occupation as it relates to accessibility, sustainability, and identity. In addition, the student is developing an instructional clothing guide detailing what individuals with HD should look for in clothing so that it can be worn throughout the disease progression. To participate in a survey to inform this student’s research, click here, or contact her directly at anita.ayala@duke.edu.
