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KDA News & Newsletters
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!
