Kennedy's Disease Association

ABOUT THE KDA • About the KDA

ABOUT THE KDA

The Kennedy's Disease Association is a non-profit corporation, incorporated in California on Monday, August 21, 2000. We are recognized under United States of America Internal Revenue Code 501(c)3 as a publicly supported organization as described in sections 509(a)1 and 170(b)1(A)(vi).

The History of the KDA

Donations are considered tax deductible by the I.R.S. in the United States. Please see the following for more detailed information:

Objectives of the Kennedy's Disease Association

The Kennedy's Disease Association has been formed with the following objectives in mind:

Financially support and promote medical research to find a cure for Kennedy's Disease

Improve awareness of Kennedy's Disease in the medical community

Create a support system for those living with Kennedy's Disease

Increase public awareness about Kennedy's Disease and its effects on families

Share information about Kennedy's Disease for those who seek it.

KDA Associates and Researchers/Doctors

Country	Total Associates	Percent	Men with KD	Woman that are Carriers	Family, Friends & Others	Doctors & Researchers
USA	568	68%	353	55	160	36
Canada	74	9%	47	10	17	2
United Kingdom	62	7%	45	10	7	2
Australia	33	4%	23	4	6	2
France	13	2%	11	1	1	0
Italy	12	1%	7	2	3	2
Mexico	8	1%	7	0	1	0
Netherlands	7	1%	5	0	2	0
Germany	6	1%	5	0	1	0
Spain	6	1%	6	0	0	0
Belgium	4	0%	4	0	0	0
China, P.R.	4	0%	3	0	1	1
Denmark	4	0%	1	1	2	3
Greece	4	0%	1	2	1	0
West Indies	4	0%	4	0	0	0
Other Countries	32	4%	18	3	11	4
Total:	841		540	88	213	52
Percent:	100%		64%	10%	25%

a. Doctors and Researchers shown are those that have joined the KDA

b. Updated February 12, 2008

Kennedy's Disease Association Services

A. Research Grants

· Financially support selected Kennedy's Disease research

B. Neurologist Mailers

· Provide Kennedy's Disease education to medical professionals

C. Research Updates

· Email updates on current research and published papers

D. Host Chat Rooms

· Twice a month open chats often with doctors, researchers, and other professionals

E. Educational Conferences

· Bi-annual conferences for Associates and researchers

· Regional research conferences

· Regional associate meetings

F. Kennedy's Disease Web Site

· One of the most comprehensive information sources for Kennedy's Disease. The site includes:

· Current medical news and information

· Research updates

· Published papers

· Association news

· Information guide for applying for Social Security-Disability

· DNA test labs

· Listing of doctors familiar with KD

· Medical and disability equipment

· List of KD contacts

G. Kennedy's Disease Forum

· On-line information including opportunities to ask questions concerning treatments, support, and other disability topics

H. Scientific Review Board

· Research and medical professionals supporting and advising the KDA

I. Support Groups

· Provides several levels of support for those affected with Kennedy's Disease, carriers, and family members

J. Tissue Donation Program

· Donated tissue is made available for qualified Kennedy's Disease research

K. Memberships

· Member of the National Organization of Rare Disorders (NORD) - Supporting and influencing research and education of rare disorders

L. Networking

· Develop friendships and relationships with others affected with KD, carriers, and family members

M. Medical History Form

· Provide a comprehensive standardized form that can be carried by those affected and given to doctors and hospitals in their living area

N. Medical Condition Card for Wallet

· Provide a standardized card to be carried in your wallet that notifies medical personnel of your condition

O. Associates Database

· Most comprehensive list of individuals affected with KD

P. Research Trial Support

· Support trials by NIH and other research organizations

Q. Liaison with Research Organizations

· Support NIH and other research organizations

KDA Annual Reports (PDF Format) need Adobe reader to view.

Where does the money go

KDA Brochure

A comprehensive easy to read guide on Kennedy's Disease explaining: what is Kennedy's Disease, how it is contracted, how to join the KDA and much more.

Mailers Were Sent To Neurologists

In the spring of 2005, over 10,000 neurologists received a cover letter and brochures from the KDA that included the following:

· An explanation of Kennedy's Disease

· How Kennedy's Disease is contracted

· A list of symptoms that may be useful in diagnosing Kennedy's Disease

· The possibility of a misdiagnosis of ALS unless a DNA test is given to the patient

· What is the Kennedy's Disease Association?

Click on the links below to see the brochure

KDA Brochure 250k file size

Please direct all correspondence, questions, donations, etc. to:

Kennedy's Disease Association

P.O. Box 1105

Coarsegold, CA 93614-1105

(United States)