PLATINUM2024

KENNEDY'S DISEASE ASSOCIATION

aka KDA   |   Coarsegold, CA   |  www.kennedysdisease.org

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KENNEDY'S DISEASE ASSOCIATION

EIN: 77-0552005


Mission

The Kennedy's Disease Association's mission is to inform, support, educate, fund research and find a cure for Kennedy's Disease.

Ruling year info

2000

Principal Officer

Mr. Terry Thompson PhD

Main address

PO Box 1105

Coarsegold, CA 93614 USA

Show more contact info

EIN

77-0552005

Subject area info

Neurology

Musculoskeletal diseases

Population served info

People with disabilities

People with diseases and illnesses

NTEE code info

Neurology, Neuroscience (H96)

Nerve, Muscle, Bone Research (H50)

Nerve, Muscle and Bone Diseases (G50)

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
People with diseases and illnesses
People with disabilities

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

KENNEDY'S DISEASE ASSOCIATION
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

3.75

Average of 1.92 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

46.5

Average of 22.6 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

0%

Average of 0% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

KENNEDY'S DISEASE ASSOCIATION

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

KENNEDY'S DISEASE ASSOCIATION

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

KENNEDY'S DISEASE ASSOCIATION

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of KENNEDY'S DISEASE ASSOCIATION’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation -$33,589 -$116,454 -$6,619 $109,611 $153,943
As % of expenses -15.5% -37.2% -3.3% 59.5% 78.6%
Unrestricted surplus (deficit) after depreciation -$33,589 -$116,454 -$6,619 $109,611 $153,943
As % of expenses -15.5% -37.2% -3.3% 59.5% 78.6%
Revenue composition info
Total revenue (unrestricted & restricted) $183,107 $196,696 $195,774 $293,954 $349,920
Total revenue, % change over prior year -46.3% 7.4% -0.5% 50.1% 19.0%
Program services revenue 6.6% 10.2% 0.0% 0.0% 4.5%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.0% 0.0% 0.0% 0.0% 0.0%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 93.4% 87.8% 100.0% 100.1% 95.5%
Other revenue 0.0% 1.9% 0.0% -0.1% 0.0%
Expense composition info
Total expenses before depreciation $216,696 $313,150 $202,393 $184,343 $195,977
Total expenses, % change over prior year -3.0% 44.5% -35.4% -8.9% 6.3%
Personnel 0.0% 0.0% 0.0% 0.0% 0.0%
Professional fees 0.0% 0.0% 0.0% 0.0% 0.0%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 92.3% 88.2% 96.9% 94.9% 78.6%
All other expenses 7.7% 11.8% 3.1% 5.1% 21.4%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $216,696 $313,150 $202,393 $184,343 $195,977
One month of savings $18,058 $26,096 $16,866 $15,362 $16,331
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $234,754 $339,246 $219,259 $199,705 $212,308

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 34.3 22.2 29.2 37.7 46.5
Months of cash and investments 34.3 22.2 29.2 37.9 46.8
Months of estimated liquid unrestricted net assets 23.3 11.6 17.6 26.5 34.3
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $620,046 $579,842 $493,173 $579,024 $760,129
Investments $0 $0 $0 $2,560 $4,398
Receivables $0 $0 $0 $0 $0
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 32.3% 47.6% 39.8% 30.1% 26.7%
Unrestricted net assets $420,046 $303,592 $296,973 $406,584 $560,527
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $0 $0 $0
Total net assets $420,046 $303,592 $296,973 $406,584 $560,527

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Form 1023/1024 is not available for this organization

Principal Officer

Mr. Terry Thompson PhD

Terry has been active in the KDA for several years, supporting his wife and fellow Board member, Kathy. He is passionate about finding treatments and a cure for KD, a disease that directly affects his family. Terry completed a 45-year professional career that included 30 years of government service, starting with three years on active duty as an officer in the U.S. Marine Corps. He retired as a Senior Executive from National Security Agency and joined Booz Allen Hamilton where he rose to the position of Vice President. He now teaches graduate courses in cybersecurity at the Johns Hopkins University. He has a BA and MA from Wayne State University in Detroit, Michigan, and a PhD from Georgetown University. Terry is an avid golfer and has participated in the KD Golf Scramble in Magnolia, Texas. He enjoys other outdoor activities with Kathy, from walks around their neighborhood to hikes in the nearby Maryland mountains.

Number of employees

Source: IRS Form 990

KENNEDY'S DISEASE ASSOCIATION

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
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Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

KENNEDY'S DISEASE ASSOCIATION

Board of directors
as of 01/18/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

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