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If you want to be in the know about what’s going on at our organization, you’ve come to the right place. Read our latest news blogs & newsletters. Check out our KDA Event Calendar to find current KDA events. You can also follow the KDA on Facebook by clicking here.

KDA Event Calendar:

Check out our KDA event calendar to find current KDA events and fund raisers. Click here  to access our calendar. If you would like an event added to our calendar, please contact the KDA.

 


KDA News & Newsletters

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!

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