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KENNEDY'S DISEASE ASSOCIATION Organization Name provided in the GuideStar Exchange* as of 12/08/2014: KENNEDY'S DISEASE ASSOCIATION

Organization Name as listed in the IRS Business Master File as of 12/08/2014: KENNEDYS DISEASE ASSOCIATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  KDA
Coarsegold, CA

GuideStar Summary

&1002; GuideStar Exchange Organization has not reached a GuideStar Exchange Participation Level ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&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

KENNEDY'S DISEASE ASSOCIATION Organization Name provided in the GuideStar Exchange* as of 12/08/2014: KENNEDY'S DISEASE ASSOCIATION

Organization Name as listed in the IRS Business Master File as of 12/08/2014: KENNEDYS DISEASE ASSOCIATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
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 
Top Funders: Private donations - $102,542
Golf Tournament - $21,937
Conference registration - $12,073
Top Funding Needs: Research Grants - $200,000
Education - $10,000


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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

(GuideStar Exchange,
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December 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

Total Revenue $136,552
Total Expenses $117,882

Revenue & Expenses

(GuideStar Exchange,
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December 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

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Balance Sheet

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Leadership

(GuideStar Exchange,
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December 2014)

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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December 2014)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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December 2014)

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Board Leadership Practices (GuideStar Exchange,
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December 2014)
?

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Organizational Demographics (GuideStar Exchange,
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)
?

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Values in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

Self-Identified Gender of Board & Staff ? and Volunteers

Board Members Staff Members full time Staff Members part time Senior Staff full time Volunteers
Female 22%
Male 78%
Transgender?/Unspecified non-conforming
Unknown/declined to state

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 December 2014

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Programs

Program: (GuideStar Exchange,
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December 2014)

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,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
December 2014)

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:

Impact Summary from the Nonprofit

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

Reviews

Organization Data Available

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