December's KDA President's Message

TerryThompson

December is a busy month for everyone, a time to get together with family and friends, get ready for the holidays, and think about the year’s accomplishments. The past year has been exciting for the KD community. We continued to build global momentum, reflected in the fact that more than 370 people from 32 countries virtually attended our annual conference. We expanded our relationships with KD patient advocacy groups in the UK, Australia, Italy, and Japan, and 2021 saw the launch of the SBMA patient group in Russia. The KD/SBMA patient registry at Sanford CoRDS began operations in June and already more than 250 people have enrolled, including the first Japanese participants. Thanks to the generosity of KDA families and supporters, we raised more than $230,000 this year to support research and education about Kennedy’s Disease. This is an extraordinary amount, and we are very grateful to everyone who contributed. Your generosity allowed KDA to award over $320,000 in research grants for the “pandemic years” 2020 and 2021 in our continuing effort to defeat KD.

Possibly the best news to end the year is about clinical trials. One is already underway in Japan, another will soon begin in Italy, and we know of at least three clinical trials being planned for the United States. This is all encouraging news and a great way to end the year. Stay tuned for next month’s message when we will discuss KDA’s goals for 2022. Meantime, the KDA wishes you a peaceful and joyous holiday season.

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 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


10th Annual KD Golf Scramble

2015GolfScramble

Saturday, April 02, 2022 at High Meadow Ranch Golf Course, Magnolia, TX. Registration & Breakfast 6:45 AM with a Shotgun Start 8:15 AM. After making the difficult decision to postpone our 2020 and 2021 tournaments due to COVID-19, we are back in the swing of things to  raise money to help find a cure for Kennedy's Disease! For more information and to register for this event, please click here.


 The Great Road Trip - Los Angeles to Rome

KD Trip Logo

KDA and KD-UK are planning an ambitious road trip, in a 29 horsepower 35-year-old Citroen 2CV in 2022, from Los Angeles to Rome from April to July 2022. The car will be shipped to Los Angeles and then shipped across the Atlantic from New York to Southampton. The Citroen 2CV, affectionately known as the tin snail, is a cult car in Europe. It was first manufactured in 1948 and production ceased in 1990. The 2CV has been comprehensively refurbished for the trip. The cost of the 2CV, and its restoration, has already been funded by a generous donor. A seven-day trans alpine cycling event will be run alongside the road trip from Chamonix to Nice in July 2022. Classic Car clubs from across the United States are also expected to join various segments of the American trip. For more information, click here.


COVID19 vaccination in patients with spinal and bulbar muscular atrophy

The Sunnybrook ALS/Neuromuscular clinic at the University of Toronto follows a large number of patients with Kennedy’s Disease (KD). Since patients with KD may experience respiratory impairment and are at increased risk of complication of respiratory infections. The Sunnybrook clinic recommends that KD patients be a priority group to receive vaccination for COVID-19. To read the letter, click here.

Dr. Christopher Grunseich, MD, a staff clinician at the National Institutes of Health has evaluated patients with spinal and bulbar muscular atrophy (SBMA) in multiple clinical studies and mentions in a letter that serious, life-threatening complications due to Covid 19 would be mitigated with COVID19 vaccination. To read the letter, click here.


Rare Leader: Terry Thompson's interview regarding the KDA

The organization, Global Genes, interviews KDA president, Terry Thompson, for their publication, the "Rare Daily." In the interview, Terry talks about the KDA's strategy, focus, and challenges as well as his management style and guiding principles. To read the interview, click here.  


THE KDA NEWSLETTER 

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MDA ENGAGE ADULT NEUROMUSCULAR CARE SEMINAR 

The MDA Engage Adult Neuromuscular Care Seminar, December 4, 2021 - 11:00 a.m. - 1:45 p.m. ET. This virtual seminar is a one-day event that will empower individuals and families with knowledge and resources specific to adult care. Discussion topics include the role of Physical Therapy and Occupational Therapy in the Treatment of Neuromuscular Disease, The Neuromuscular Research Landscape, and Nutrition. To register, click here.


MDAAccessworkshops

MDA Access Workshop - Access to Coverage: Equipment and Assistive Devices 

This on demand workshop provides an overview of obtaining insurance coverage for medical equipment and assistive devices. It covers the general process for obtaining coverage of common items, as well as what individuals can expect if they are faced with a denial on coverage. The entire neuromuscular disease community can expect to take away from this on-demand workshop tools and resources to support the journey in obtaining equipment or devices. The workshop is designed so participants can take the full workshop or navigate to a specific area of interest. To take the workshop, click here. 


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