Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

Kennedy’s Disease Knows No Boundaries...

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

Disability Resources

One question we are often asked is where do I find information on benefits available for someone disabled. Today, we are fortunate that we have access to the internet. Almost any information or forms you need can be found ‘in the cloud’. Below are a few examples of websites that provide information for those living with a disability.

Applying for Social Security - Disability is a complex process. Besides the information found in the KDA SS-D Guide, there are other online resouces worth checking itnto before applying.

A. Social Security Online has an entire section on Disability Benefits for People with Disabilities. Within this section there is information about:

How Social Security determines if you are disabled?
Social Security – Disability Insurance (SS-D) that pays benefits to individuals who can no longer work because of a disability.
Supplemental Security Income (SS-D) that will pay benefits based upon financial need.
How to apply for SS-D and/or SS-I?
If you are denied benefits, how to appeal the decision.
What Work Incentive Programs are available?

B. Disability.gov is a good site that covers a variety of questions about programs available including military benefits. It also has links to other sites and documents.

C. Another excellent resource is the Americans with Disabilities site. The ADA has developed comprehensive ADA_Sign resources concerning your rights, regulations, and programs available. There is also several links to other government programs that provide resources or benefits for the disabled.

D. We hope you never have a discrimination issue because of your disability, but just in case the EEOC website is a good resource for issues regarding this subject.

E. The Department of Labor’s website, Office of Disability Employment Policy, is a place to help people with disabilities to find employment opportunities.

F. The Job Accommodation Network has information on ways to help a disabled person continue to work. It works to benefit both employers and employees by providing practical solutions to common problems. The ‘A-to-Z Listing if Disabilities and Accommodations’ is very good.

G. A website I have not used, but appears to have a good deal of information is called Disability Secrets . It has information on a variety of disability subjects including Social Security and Workers Compensation. Since it is a non-government site, I am not certain how or whether it receives compensation other than through advertising.

H. DisabilityResources.Org has a web-based resourse for those seeking help for specific disabilities in the United States. For a list of resources available within each state, click on the following link: United States

They also have an extensive list of disabilities by categories with applicable links: Disability Categories . Note: We have found that some links are broken or no longer direct you to the correct site.

We need your help. If you know of other sites that are also good resources, please let us know so we can add them to this page.