Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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

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Select a news topic from the list below, then select a news article to read.
The latest news from the Kennedy's Disease Association Team

About the KDA

About the Kennedy's Disease Association

From the list below choose one of our FAQs topics, then select an FAQ to read. If you have a question which is not in this section, please contact us.

Information and ResourcesThe Kennedy’s Disease Association (KDA) has developed several programs and resources to support and make information available to individuals and their families that are directly affected by this rare neurological disorder. 

Our resources, programs and support include KDA Information Guides. These guides include topics such as applying for Social Security - Disability, exercise programs for those with KD, and financial planning. Our KDA Newsletters sent out periodicaly include updates on research and clinical trials, personal stories and helpful information. Our KDAConferences and Educational Symposiums provide a place for those of us living with Kennedy’s Disease as well as for researchers to meet and share their findings. Our Facebook page provides association and personal news as well as updates and links to information of interest. The Living with Kennedy’s Disease Blog has articles related to living with Kennedy’s Disease, research, and personal stories. In addition, we haved provide plenty of links and videos to relevant information and ressources related to Kennedy's Disease on the left navigation pane under the category Information and Resources.

Our Focus Remains on Research, Education and Support

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Since Kennedy’s Disease is a rare disorder, funding for research is not always readily available.  The Kennedy’s Disease Association (KDA) financially supports as well as promotes research to find a treatment or cure for this disease.  90¢ of every dollar donated goes towards Kennedy’s Disease research and education.

The KDA supports research through the following programs:

  • Research Grants: 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 after a thorough review of each applicant’s research.  Applications from junior investigators and from senior post-doctoral fellows are encouraged.
  • Young Investigator Awards: The KDA also provides awards to help young investigators attend the Gordon Research Conference on ‘CAG Triplet Repeat Disorders.’  Researchers from around the world attend this bi-annual conference.  The focus of this conference is on various CAG triplet repeat disorders, including Kennedy’s Disease.
  • Emergency Grants: Occasionally, the KDA has supported an on-going research project allowing a lab to continue their research while applying for additional funding.

What is Kennedy's Disease

 

Kennedy's Disease Questions & Answers  (PDF File)

Kennedy's Disease (also known as Spinal Bulbar Muscular Atrophy, SBMA, or Kennedy's Syndrome) is a rare and currently incurable and non-treatable X-linked recessive genetic progressive neuro-muscular disease. Both the spinal and bulbar neurons are affected, causing muscle weakness and wasting (atrophy) throughout the body which is most noticeable in the extremities (legs/arms). It is especially noticeable in the face and throat, and causes speech and swallowing difficulties, major muscle cramps as well as other symptoms (please see "KD Symptoms" section of this Web site for more detail).

KD is an adult-onset disease with symptoms usually appearing between the ages of 30 and 50. However, earlier onsets have been recorded.


Generally males with this inherited gene develop symptoms, while females with the gene are usually just carriers. In rare cases, however, females have been known to exhibit symptoms as well. Life expectancy is noted to be at or almost normal.


It is estimated that 1 in 40,000 individuals worldwide have Kennedy's Disease. However, many go misdiagnosed or undiagnosed for years. The number one misdiagnosis is the fatal Lou Gehrig's Disease (ALS).

What causes the symptoms that are associated with Kennedy's Disease:

Motor neurons are long nerve cells that extend from your spinal cord to your muscles.  These nerve cells fire to make your muscles contract. In KD (Kennedy's Disease) the nerve cells become dysfunctional and eventually die, leaving the muscle unable to contract.

The androgen receptor is a protein that lives inside the nerve cell.  Many cells have the androgen receptor protein, but motor neurons have more than most. The androgen receptor waits for testosterone to come and bind to it. The binding of testosterone to the androgen receptor somehow initiates the disease. Since men have much higher levels of testosterone, they are affected by the disease.

Wikipedia - Definition of Kennedy's Disease (also genetic chart)

Description of Spinal Bulbar Muscular Atrophy (aka Kennedy's Disease)

The KDA Archives

In this section you will find older articles of chat room transcripts, research updates, News, Conferences, etc.

Archived Transcripts and Articles

Those of us Living with Kennedy's Disease share a bond.

We live with the hope that soon there will be a treament or cure. Until then, we laugh, we cry, and we live with this condition. And, we are family ...

2017 Chat Room Transcripts

2016 Chat Room Transcipts

Archived Chat Room Transcripts

Archived Transcripts

In this section we will provide specific 'How To' instructions or resources to help you hold your own fund raising activity.  We encourage anyone with experience in holding certain fund raisers to submit guides or resource information that we can add to this section.

How is your money spent