January's KDA President's Message

TerryThompson

Welcome to 2023, the start of a new and promising year for the Kennedy’s Disease community. As we heard at the KDA 2022 conference, AnnJi Pharmaceuticals is recruiting KD patients for a clinical trial of AJ201, a drug designed to enhance the degradation of the mutant androgen receptor and provide other benefits. NIH is recruiting patients to participate in the SBMA Health Index study conducted in collaboration with the University of Rochester School of Medicine and Dentistry. We anticipate additional studies and potential trials this year.

We also support the expansion of new areas of research into Kennedy’s Disease. Junior scientists in several countries are opening new avenues of research, testing new hypotheses, and identifying potential opportunities for treatment. KDA hopes to accelerate this trend. In addition to the Waite-Griffin Fellowship program launched in 2022, and thanks to a recommendation from KDA’s Scientific Review Boards, we will be reaching out to researchers in related fields of neurology to attract more scientists into KD research. We will also be expanding KDA’s outreach to clinicians to identify and integrate clinical studies and share information with patients about the management of KD.

All this work is made possible by the continuing generosity of the KD community. Thanks to donations from patients, families, researchers, clinicians, sponsors of the Great Road Trip, and fundraising efforts in the KD Golf Scramble, Bay Area Rare Disease Day event, and others, KDA experienced a tremendous fundraising year in 2022. We will focus our efforts in 2023 on applying these funds towards our goals of developing effective treatments and finding a cure. Happy New Year!

Terry Thompson
President
Kennedy's Disease Association


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 either online or by phone today.  To enroll simply call CoRDS at 1-877-658-9192 and they will enter data on your behalf or visit their website.

Thank you!

The Kennedy Disease Association Board of Directors


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