Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every few days a baby boy is born with this DNA defect"

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.

Tissue Donation Guide

doctors, researchers, scientists Doctors, researchers, and scientists have long recognized the benefit of human tissue to further their research. Kennedy's Disease research is no different. In response to this need, the Kennedy's Disease Association (KDA) is pleased to announce the creation of a Tissue Donation Program for individuals with Kennedy's Disease who wish to donate their tissue. This program is similar to an organ donation program, but is different because of the formalities required and the specific use for the tissue.

Tissue will be stored at a KDA approved tissue storage facility and will be provided for biochemical and genetic studies. Tissue samples and results of clinical testing will be made available to qualified scientists only after their research proposal is reviewed and approved by the KDA Scientific Review Board (SRB) and Board of Directors. The KDA is hopeful that these studies will lead to advances in the diagnosis, treatment, and eventual cure of Kennedy's Disease.

Since any donation decision affects others, we recommend that you discuss it with your family so that they will understand and support your decision. If you are interested in donating tissue for Kennedy's Disease research, please review the attached document that outlines the program and includes the forms needed to make a tissue donation. Questions should be emailed to This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Please Note: Pre-planning is important. If you wish to be a donor, certain paperwork must be signed and arrangements need to be made with the hospital and pathologist ahead of time.

The Tissue Donation Document can be downloaded in 2 different formats below;

Pathology Services

The KDA cannot endorse or recommend any pathology services. However, we are aware of one such service where the president of the company is also someone living with Kennedy's Disease. Should you have difficulty locating a local service, you might consider contacting the following company. If you advise this service that you are an associate of the Kenedy's Disease Association, the company will offer a discount.

Regional Pathology and Autopsy Services is a nationwide provider of autopsy tissue retrieval for medical research and has protocols for handling tissue retrieval for Kennedy's Disease patients. RPAS has offices in many cities and also has traveling staff available to go where ever they are needed. Procedures are done in the funeral home the family is using for their services.

RPAS provides a discounted cost to members of the Kennedy's Disease Association and is available to help KDA families wanting to donate tissue where ever they may be.

REGIONAL PATHOLOGY AND AUTOPSY SERVICES, LLC
Nationwide Medicolegal Autopsy Services - DNA - Toxicology - Tissue Retrieval
PO BOX 16003 Oakland, CA 94610
Phone: (877) 330-7727
www.regional-pathology.com