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KENNEDYS DISEASE ASSOCIATION

AKA  KDA
Coarsegold, CA
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GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Organization has not reported Revenue & Expense data to GuideStar
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

KENNEDYS DISEASE ASSOCIATION
Also Known As: KDA
Physical Address: Coarsegold, CA 93614 
EIN: 77-0552005
Web URL: www.kennedysdisease.org 
NTEE Category: H Medical Research
H96 Neurology, Neuroscience
H Medical Research
H50 Nerve, Muscle, Bone Research
G Disease, Disorders, Medical Disciplines
G50 Nerve, Muscle and Bone Diseases
Ruling Year: 2000 
How This Organization Is Funded: Private donations


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Mission Statement

The objectives of the Kennedy's Disease Association are: 1. Financially support and promote medical research to find a treatment or cure for Kennedy's Disease 2. Improve awareness of Kennedy's Disease in the medical community 3. Create a support system for those living with Kennedy's Disease 4. Increase public awareness about Kennedy's Disease and its effects on families 5. Share information about Kennedy's Disease for those who seek it.

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses

Summary financial information has not been provided by the nonprofit. Click here if you are associated with this organization and want to provide this information.

Revenue & Expenses

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Balance Sheet

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

Financial Statements

Audited Financial Statement is not available for this organization.

Annual Reports

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Leadership (GuideStar Exchange,
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February 2013)

Mr. Ed Meyertholen, PhD

Term:

Since Aug 2013

Profile:

Dr. Meyertholen went to Boston College where he graduated with a Biology/Chemistry major. He then attended graduate school at Purdue University and received his Ph.D. in biology in 1982. After holding faculty positions at several universities he settled in Austin, TX where he taught Cell and Molecular Biology, Genetics and Physiology at Austin Community College. In 2005, Ed was awarded a sabbatical leave and was able to do research on Kennedy's Disease in the lab of Dr. Diane Merry at Thomas Jefferson University in Philadelphia. In 2012, Ed accepted a position as Assistant Dean and Director of Pre-Health Programs at Georgetown College, Georgetown University, Washington, DC. Ed is also a member of the Scientific Advisory Board of the KDA. Ed was diagnosed with KD in 1999 when he was 45. Since having been diagnosed, he has taken up running and has completed five marathons, including the Boston Marathon in 2004. Ed has tried to use his running as a means of raising money for the KDA.

Board Chair (GuideStar Exchange,
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February 2013)

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Board of Directors (GuideStar Exchange,
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February 2013)

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Officers for Fiscal Year (IRS Form 990)

Officers information is not available for this organization.

Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in February 2013

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Programs

Program: (GuideStar Exchange,
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February 2013)

Budget:
--
Category:
Population Served:

Program Description:

Fund Kennedy's Disease research grants, support groups, bi-weekly chat sessions, maintain a comprehensive website that provides Kennedy's Disease information for those who seek it, educate the neurological community and the public, participate in an annual conference for Kennedy's Disease with researchers from around the world.

Program Long-Term Success:

The KDA funded two research grants. A $25,000 grant was awarded to Maria Pennuto, Ph.D. from the National Institute of Health. Another $25,000 grant was awarded to Udai Bhan Pandey, Ph.D. from the University of Pennsylvania.

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Kennedy's Disease Research Grants (GuideStar Exchange,
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February 2013)

Budget:
$50,000
Category:
Medical Research
Population Served:
Male Adults

Program Description:

Because the KDA is relatively small and funding is limited, our focus in recent years has been to provide “seed-money” to post-doc and other young researchers who do not currently have the funding or credentials to receive funding from larger organizations such as the National Institute of Health or the MDA. This “seed-money” normally provides the researcher an opportunity to further his/her research while giving him/her time to apply for other grants In recent years, the awarding process takes place in the fall. In the late summer, the KDA announces to all known Kennedy’s Disease Researchers that anyone interested should send in their grant requests by late August.  The Scientific Review Board reviews all applications. The reviewers focus on research projects that are specific to or could be used in finding a treatment or cure for Kennedy’s Disease.  The reviewers ask three or four of the applicants to submit full grant applications by the end of September. In late October, the Scientific Review Board reviews the finalists and recommends to the Board of Directors which applicant(s) should receive research funding.  By late November, the Board of Directors awards the grants.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit

91¢ of every dollar donated is used for Kennedy's Disease research and education.
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Reviews

Organization Data Available

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