Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. The organization has many resources which include blog posts with information designed for people living with Rare Diseases like Kennedy's Disease. Subjects include: Global Genes Guide to Medical Gaslighting, Next Gen Advocacy and The Beginner’s Guide to Rare Disease.
The Kennedy's Disease Association supports the 2025 Gordon Research Conference (GRC). The CAG Triplet Repeat Disorders GRC is a premier, international scientific conference focused on advancing the frontiers of science through the presentation of cutting-edge and unpublished research, prioritizing time for discussion after each talk and fostering informal interactions among scientists of all career stages. The conference program includes a diverse range of speakers and discussion leaders from institutions and organizations worldwide, concentrating on the latest developments in the field. The conference is five days long and held in a remote location to increase the sense of camaraderie and create scientific communities, with lasting collaborations and friendships. To learn more, click here
Mr. Lewis Myers joins the Kennedy's Disease Association Board of Directors. Lewis brings a broad array of skills to the Kennedy’s Disease Association Board of Directors. To learn more about Lewis and other board members, click here.
The KDA has provided over $3,000,000 for KD research to find a cure. However, we still have miles to go. Scientific research is expensive, and we need to increase our fundraising. To do this, we need your help. We’re not asking for money. What we really need is your time and effort. If you have a couple of hours a month we urge you to volunteer. To volunteer, please contact us.
At the KDA November Board meeting.The KDA Board met with the KDA Scientific Review Board during the KDA Conference in Orlando, Florida.
The aim of this study was to determine the frequency and relative importance of symptoms experienced by patients with spinal and bulbar muscular atrophy (SBMA).
A 2023 research article from researchers in Italy contains a graphic about the various therapies (like AJ201) that are or have been tried to deal with the toxic Androgen Receptor in Kennedy's Disease.
