November's KDA President's Message

We have a lot to celebrate as 2022 draws to a close. Fundraising reached an all-time high thanks to the KD/UK-KDA Great Road Trip, the KD Golf Scramble in Texas, and generous donations from KD families, researchers, and supporters.  These funds will help accelerate research in basic research and potential therapies moving towards the clinic. 

We heard big news about clinical trials this year.  AnnJi Pharmaceuticals announced the clinical trial of AJ201, a compound targeted at degrading the mutant androgen receptor in KD patients. AJ201 was tested for safety in healthy volunteers and is now moving to a Phase 2 study in KD patients.  Two other forthcoming clinical trials were announced at KDA 2022 and we should hear more news about these trials in the coming months. 

One of the biggest causes for celebration is the growing and global KD family.  KDA 2022 was our first hybrid conference and had more than 350 registrants including the in-person conference in San Diego and online.  The conference theme, “The Global KD Family: Together Again,” was developed by KDA Vice President Jameson Parker and reflects what Jameson called the “connections that bind us together” and “help us to persevere, help us soldier on until that treatment or cure is found.” In addition to the conference, KD family connections are evident in the Kennedy’s Disease Patient Group on Facebook and the Carriers Group that meets online. 

So, we can end 2022 on a positive and optimistic note.  The KDA Board of Directors joins me in wishing you a peaceful and happy holiday season and a promising 2023. 

Terry Thompson
President
Kennedy's Disease Association

2022 KDA Conference - The Global KDA Family Together Again!

The 2022 KDA Conference was held on November 9 -11 at the Holiday Inn Bayside in San Diego and virtually on Zoom. The KDA board would like to thank everyone who attended, presented and planned this event to make it a huge success. Agenda, click here.

The NIH Launches a New Kennedy's Disease Study

The NIH has launched a new study titled "Clinical, Molecular and Imaging Biomarkers in Spinal and Bulbar Muscular Atrophy (SBMA)". The study is underway and men with Kennedy's Disease can volunteer for this study. The object ot the study is to identify measurements that change over time in SBMA, including tests of muscle strength and function, as well as measurements of muscle and fat size. For more information regarding this study, please click here. To watch a video presentation of the study, click here. Candidates can contact This email address is being protected from spambots. You need JavaScript enabled to view it. at NIH for information or to volunteer for this study. Angela's email is This email address is being protected from spambots. You need JavaScript enabled to view it. 

New KD Global Registry

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!

The KDA is partnering with the Coordination of Rare Diseases at Sanford Health (Sanford CoRDS) to create a global registry of KD/SBMA patients and carriers. This registry will facilitate KD/SBMA research and will be used to recruit patients for clinical trials. Most important, a robust registry will provide a roadmap for investigators and will help them develop improved treatments and potentially a cure for this debilitating rare disease. Here are a few important things for you to know about the KD/SBMA registry.

• The KD patient registry was developed jointly by NIH and the KDA.
• KD patients and carriers are all urged to enter your data. There is a separate form for carriers.
• Entering data into the registry requires completing the CoRDS profile and two questionnaires, the CoRDS standard questionnaire and the KD/SBMA questionnaire. The entire process should take about 30-45 minutes (less for carriers) and does not have to be done all at one sitting.
• Data can be entered into the registry online, on paper, or by phone with Sanford CoRDS. To learn more, click here.  
• There is no cost for entering your data into the registry.
• To protect your privacy, each participant is assigned a Global Unique Identifier that enables de-identification (anonymization) of the data when shared with researchers approved by Sanford Health’s Scientific Advisory Board. Your name and other identifying information will not be shared.
• Providing your consent to give KDA access to your data will allow us to contact you for studies and clinical trials and help improve our understanding about where to drive our research.
• KDA’s goal is to make CoRDS the global repository for KD/SBMA patients. The registry is compliant with U.S. Federal law and the European Union’s General Data Protection Regulation.

Please enroll today, either online or by phone: To enroll online, click here or simply call CoRDS at 1-877-658-9192 and they will enter data on your behalf.

Thank you!

The Kennedy Disease Association Board of Directors

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