Programs and results
What we aim to solve
The Kennedy's Disease Association (KDA) was founded to inform, support, and educate patients and physicians, and to raise money for research into Kennedy's Disease (KD), also known as Spinal and Bulbar Muscular Atrophy (SBMA). KD/SBMA is a rare, genetic neuromuscular disease that primarily affects men. Women are carriers and sometimes experience symptoms. The gene mutation that causes the disease was discovered in 1991, but there are as yet no effective treatments and there is no cure. KDA has funded research grants to academic and medical research institutes in the U.S., UK, Canada, Italy, Spain, and Japan to support research into KD/SBMA disease mechanisms and potential treatments. While this research has been promising, with several KDA grants leading to clinical trials of potential therapies, additional funding would accelerate this research by increasing the number of researchers and number of experiments that could be conducted
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Kennedy's Disease Research Grants
The Kennedys Disease Association financially supports as well as promotes research to find a treatment or cure for Kennedy's Disease. The KDA is committed to fund one or more research grants each year to further the understanding of the pathological mechanisms of Kennedy's Disease. Grants are awarded based upon the recommendations of the KDA's Scientific Review Board (SRB). The KDA grant awarding process takes place each year in the fall. In the late summer, the KDA communicates that interested researchers should send in their grant requests as outlined in the proposal notification. The SRB reviews all applications with a focus on research projects that are specific to finding a cure or treatment for Kennedy's Disease. The SRB recommends to the Board of Directors for approval.
Where we work
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Total dollars received in contributions
This metric is no longer tracked.Totals By Year
Related Program
Kennedy's Disease Research Grants
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Total dollar amount of grants awarded
This metric is no longer tracked.Totals By Year
Related Program
Kennedy's Disease Research Grants
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
KDA's goals are to inform, support, educate, and provide funding for research into Kennedy's Disease (KD), also known as spinal and bulbar muscular atrophy (SBMA). We are an all-volunteer organization, with over 90% of the funds we raise going to KD/SBMA research. Our ultimate goal is to find a cure for this devastating disease.
Our first goal is to inform patients and their families as well as physicians about Kennedy's Disease KD/SBMA. KDA's website provides a wealth of information for newly diagnosed patients and for physicians who may not be familiar with the disease. KD/SBMA is a rare, neuromuscular disease that is under-diagnosed in the general population and sometimes misdiagnosed as ALS.
A second goal is to support patients and their families. KDAs website provides frequent updates on clinical trials and current research into the disease. We encourage patients and their families to contact us by email or phone with any questions they may have, and we work to help them find local neurologists familiar with KD/SBMA and address other questions they may have.
Another important KDA goal is to educate patients, their families, and medical professionals about the disease and research underway to treat and eventually cure the disease. We address this goal through maintaining current information on the KDA website and in a quarterly newsletter and in our annual conferences attended by patients, family members, and researchers. These conferences, which recently have included a virtual component, provide the latest information about clinical trials and KD/SBMA research as well as offer suggestions to patients for managing the symptoms that patients experience, including the increasing loss of mobility and/or speech and swallowing problems.
KDAs most important goal is to raise money for research into the mechanisms causing KD/SBMA and into potential treatments for the disease. Our ultimate goal is to find a cure for this devastating disease that affects so many people. Recent research from the United Kingdom has suggested that the prevalence of KD/SBMA is much higher than previously believed, and we believe this information will spur additional research that may eventually lead to a cure. Each year, after review and approval by our Scientific Review Board, KDA provides research grants to established labs in several countries. Because of our limited budget, most grants are treated as start-up funds for junior researchers who are then mentored by senior KD/SBMA medical researchers. To encourage more scientists to engage in KD/SBMA research, in 2022 we initiated a fellowship program aimed at post-doctoral students to focus on Kennedy's Disease. With additional funding, we believe that existing labs can increase their current efforts on KD/SBMA and accelerate development of therapies to treat the disease.
What are the organization's key strategies for making this happen?
The KDA's strategies for achieving our goals focus on communications, information sharing, building relationships with the medical research community and counterpart patient advocacy groups in other countries, and increasing our fundraising efforts.
Our communications and information sharing efforts include maintaining an updated website where information on the latest research and clinical trials is shared with our members. We also share this information in our quarterly newsletter and in social media, especially the Kennedy's Disease Association and Kennedy's Disease Patient Group sites on Facebook. In our annual conferences, we provide the opportunity for patients and their families to hear from KD/SBMA researchers and clinicians. The exchange of information at these conferences is invaluable, both for patients and researchers, who learn about the real-life experiences of people with the disease.
KDA has built strong relationships with the KD/SBMA research community. Starting with its establishment in 1999-2000, KDA has developed productive and lasting relationships with lead U.S. researchers at the National Institutes of Health (NIH) and several major U.S. universities that engage in research into neuromuscular diseases. These relationships have paid dividends as the U.S. research team, especially at NIH, have mentored and trained researchers in the UK, Italy, Japan, Canada, and South Korea. Researchers from these countries attend KDA conferences and share their latest research with KDA members.
KDA has leveraged the relationships with researchers in other countries to establish strong bonds with KD/SBMA patient advocacy groups in the UK (KD-UK), Italy (AIMAK), Japan (SBMA Japan), and Australia (KD Downunder). Patients from Italy have participated in patient stories videos, and KDA and KD-UK have jointly sponsored annual conferences in 2019 and 2023. In 2022, KD-UK, KDA and AIMAK jointly sponsored the Great Road Trip, a fundraiser based on driving a vintage Citroen 2CV from Los Angeles, California to Rome, Italy. The relationships with foreign patient advocacy groups continue to grow, with a joint patient-researcher planned for Milan, Italy in 2025.
KDAs fundraising efforts have historically focused on KD/SBMA patients and their families. While this support has been very generous, allowing KDA to award approximately $2.5 million in research grants since 2000, to reach the next level of research funding, we need to look for additional sources of donations, including foundations and corporations. Our current strategy is to launch a major fundraising campaign to raise $5 million in three years. The 5 in 3 Campaign will begin in 2024. The goal of this campaign is to accelerate global research into effective treatments and a cure for KD/SBMA.
What are the organization's capabilities for doing this?
As an all-volunteer association, KDA can achieve most of our goals through continuing hard work. Communications, information sharing, and building relationships with researchers and foreign patient advocacy groups are ongoing activities supported by our Board of Directors, several of whom actively engage in maintaining these activities. We can also maintain our existing fundraising activities, including the annual Texas Golf Scramble golf tournament, thanks to the efforts of volunteers. Where we need help is in raising major funds to support expanding and accelerating research into a cure for KD/SBMA.
To achieve our goals of the 5 in 3 Campaign, we have to outsource some planning and applications efforts. We have engaged Your Part-Time Controller, a company specializing in non-profit accounting and fundraising, to develop a plan for foundations funding rare disease medical research. We may also use this company to help us write letters of intent and applications to those foundations we decide to approach.
Depending on the success of our efforts, we may outsource other aspects of our fundraising efforts to access capabilities beyond what we can do with KDA volunteers.
What have they accomplished so far and what's next?
KDA achieved a number of important steps in 2023 designed to take our organization to the next level. We transitioned our website to a company specializing in non-profit organizations, enhancing our information sharing and communications capabilities.
We established virtual support groups for KD men and female carriers to enable more information sharing among those affected by the disease. We provided $437,000 in research grants, including one fellowship, to KD researchers in the U.S., Spain, and Italy. We supported other research activities including the Gordon Conference on polyglutamine expansion diseases, a separate workshop with KD/SBMA researchers and specialists from other neuromuscular diseases to facilitate cross-fertilization of research ideas and supported the London International Scientific Conference on Kennedys Disease. A KDA member also attended the European Neuromuscular Consortium (ENMC) conference in Amsterdam.
We supported the launch of the first in-person trial of a potential treatment for KD/SBMA with communications and recruitment advice, as well as a second trial now in the planning stages. Our KD/SBMA patient registry was used by the NIH for recruiting patients to an ongoing natural history study that will be used by researchers worldwide.
In addition, we have begun to leverage our recent membership in the Late-Onset Neuromuscular Disease Consortium (LONDC) to spread awareness of KDA and Kennedy's Disease (SBMA). We added two people to our Board of Directors and engaged a KDA member with strategic planning and fundraising experience as an advisor. And we have engaged a company specializing in accounting and fundraising for non-profits to help plan our expanding fundraising efforts for the 5 in 3 Campaign.
These and other activities now in the planning stages should help us achieve our goals for 2024 and beyond and ensure progress towards our ultimate goal of finding a cure for Kennedy's Disease (SBMA).
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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Connect with nonprofit leaders
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KENNEDY'S DISEASE ASSOCIATION
Board of directorsas of 01/18/2024
Mr.. Terry Thompson
None
Terry Thompson
None
Jameson Parker
None
Kathy Thompson
None
Simon Hill
None
Steven Rittmaster
None
Dale Traxler
None
Ronald Moffett
None
Joan Sorensen
None
Randy Soo Hoo
None
John Lauber
None