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KDA News & Newsletters
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.
We are pleased to bring you the first edition of the International Kennedy's Disease Newsletter, a collaborative effort of Kennedy's disease patient advocacy groups in six countries.
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scientific conference focused on advancing the frontiers of science through the presentation of cutting-edge and unpublished research, prioritizing time for discussion after each talk and fostering informal interactions among scientists of all career stages.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.
Professor Diane Merry of Thomas Jefferson University and a member of KDA's Scientific Review Board, received the prestigious Javits award for 2024.
KDA is one of 31 neuromuscular disease organizations supporting speedy authorization of funding for the Federal Aviation Administration. Included in this authorization are requirements for wheelchairs on planes as well as more attentive services to disabled flyers.
The MDA "Guide for Caregivers" takes up and covers the areas of Finding Care Giving Help and Daily Care for Individuals living with Neuromuscular Diseases.
Dim Sum Give Some Chef Tasting Charity Event
The year 2023 was very busy, productive and eventful year for the KDA as it continues to strive to find a cure for Kennedy's Disease and support those effected by the disease. Thanks to all of you who have supported us by donating your time and money over the years.
If KD/SBMA is suspected, your doctor needs to request a separate test that determines the number of CAG repeats in the Androgen Receptor (AR) gene. If you feel you might need some financial help paying for the DNA test, the KDA may be able to help. Please use our Contact Us form with “DNA Test” in the subject line and we will send you an application form to be completed by your physician and yourself.
A combination approach of increasing the SIRT3 protein and inhibiting PARPs (poly-ADP ribose polymerase) helps rescue motor endurance of mice modeling the neuromuscular disease spinal bulbar and muscular atrophy also known as Kennedy's disease, according to a new study by Philadelphia College of Osteopathic Medicine (PCOM) researchers.
Researchers at Nagoya University in Japan developed and conducted this survey and are inviting KDA members to participate to allow for a cross-cultural comparison of KD. Upon completion, this research will be published to further the understanding of SBMA transmission among families, improve public knowledge and understanding of SBMA, and to build a foundation for communications between patients and researchers.
The French national Kennedy’s disease protocol provides management recommendations for patients with KD. This document provides a summary, abstract and the original research article.
The KDA’s Board of Directors has approved the following goals for 2023
We need your help! We’ve heard from patients and researchers about the need for a patient registry for Kennedy’s Disease also known as Spinal and Bulbar Muscular Atrophy - SBMA. We’re pleased to announce that the KD/SBMA registry is now ready for your data!
