November's KDA President's Message
Somehow, October has flown by and it’s already November. For me, November is the month to reflect on everything that has happened since January and to count my many blessings. There is so much to be thankful for, and I’d like to begin with a huge THANK YOU to everyone who participated in and attended the 2021 KDA virtual conference. Over 370 people from 32 countries registered for this event, more than fulfilling its promise of “bringing the global KD community together.” Patients, clinicians, and researchers from several countries contributed to one of the best conferences in KDA’s history. Special thanks to KDA Board member and conference chair Kathy Thompson and all those who helped her make the conference a success.
I’m also thankful for the generous support from KD patients and their families. Thanks to you, KDA was able to award $321,000 in calendar year 2021 to seven SBMA researchers in four countries. (Five of these grants were delayed from 2020 due to the pandemic.) That’s an amazing number for a rare disease organization. Your contributions will help advance the science in understanding the disease and developing effective treatments. One of the 2021 grants will support a clinical trial in Japan, and during the conference we heard about at least one other clinical trial that will begin next year. This is an exciting and important time for everyone in the KD community, and I’m feeling very optimistic about the future.
Thank you all for your continuing support. I wish everyone a happy and peaceful Thanksgiving, including quality time with family and friends, some reflection on the past, and hope for the future.
Kennedy's Disease Association
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 NIH Launches a New Kennedy's Disease Study
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.
The Kennedy Disease Association Board of Directors
10th Annual KD Golf Scramble
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
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.
THE KDA NEWSLETTER
Click on the icon below to acces the KDA newsletters
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.
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.