January's KDA President's Message
“Happy New Year!” is the greeting for a holiday celebrated around the world, a time for new beginnings, renewed energy, optimism, and hope. For the Kennedy’s Disease family, 2022 promises to be an exciting year. Thanks to your continuing generosity, KDA will be able to award significant funds to the global SBMA research community. The grants process will be facilitated by a refreshed Scientific Advisory Board under the leadership of Dr. Andy Lieberman from the University of Michigan Medical School. (Click here to see the full membership of the SRB.) In our October conference, we heard about several clinical trials that will begin this year. These trials will use data from the CoRDS KD/SBMA patient registry. More than 260 people have already enrolled in the registry, which is becoming an important source of data for researchers, clinicians, and pharmaceutical companies. In addition to supporting SBMA research, KDA in 2022 will also increase support for KD patients and families. You’ll see more about this in the coming months, and we welcome any thoughts you might have. Please send us your suggestions by clicking here to access our contact us form. In the subject field please type “Ideas for KDA in 2022.” We’ll read all of them and will respond to as many as we can. Thanks for your continuing support, and Happy New Year!
Kennedy's Disease Association
The NIH COVID-19 Treatment Guidelines When Omicron Is the Predominant Circulating Variant
You may be aware that the National Institutes of Health recently published a summary of therapies, including monoclonal antibodies, that may be therapeutic against COVID-19 and the omicron variant. Some of these therapies are in short supply and may be available only to people in groups who are at "high risk for progression to severe COVID-19 and who might benefit from these therapies." To read the NIH summary of treatment guidelines, click here. Dr. Christopher Grunseich, MD of the NIH states in a lettter that SBMA patients who have contacted the COVID-19 infection should have access to the COVID-19 therapeutics, to view this letter, 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.
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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RARE DISEASE DAY - FEBRUARY 28th
SHOW YOUR STRIPES WITH NORD! Grab your favorite zebra print shirt or toss on a striped scarf and meet us online for a community gathering marking the 12th annual Rare Disease Day! This one hour event will be packed with entertainment from a star-studded guest lineup and offer a place to connect and chat with other rare community members and allies. Date: Monday, February 28. Time: 1:30-2:30pm ET. Price: Free. To register for the event, 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.