Welcome! First time visitor. We are glad your here. We encourage you to explore our website to learn more about Kennedy's Disease and the KDA. The below information will give you a brief overview of our organization and Kennedy's Disease.
What is Kennedy's Disease
Kennedy's Disease is a rare 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.
What is the KDA
The KDA is a non-profit corporation, incorporated in California on 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). In the United States, donations are considered tax deductible by the Internal Revenue Service, and our federal tax identification number is 77-0552005. The KDA's mission is to inform, support, educate, fund research and find a cure for Kennedy's disease. Click here to learn more about the Kennedy's Disease Association?
What is the purpose of the KDA and what is the organization's focus.
The KDA continues to focus on Research and Education. Since 2003, 92 cents of every dollar spent by the Kennedy's Association went to fund research and education. 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. The first KDA conference and educational symposium was held in 2001. The KDA has been committed in holding these conferences every year to bring researchers and people effected by Kennedy's Disease together.
What Research has been done on Kennedy's Disease
Our site has research information on Kennedy's Disease. Click here to find out what researchers are doing to find a treatment or cure for Kennedy's Disease?
How are research grants awarded?
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. 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. The Scientific Review Board reviews the finalists and recommends to the Board of Directors which applicant(s) should receive research funding.
Ways to connect with people effected by Kennedy's Disease.
You can connect with others through our Forum platform. You can attend our yearly KDA conference and you can follow us on our Facebook page. There are many who are willing to help. Always remember, you are not alone. Click here for more resources
How can I get involved and help the KDA.
You can help the KDA by making a tax deductible donation, holding or participationg in a fund raiser and/or by volunteering. To volunteer or to partner with the KDA on a fund raising event, please Contact the KDA.