Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

Consider Donating Tissue

KD-TissueDoctors, 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) and the University of Michigan Brain Bank are 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 email address is being protected from spambots. You need JavaScript enabled to view it..

 
kdalogo------ bb_logo

Working together to find a cure-----

 

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 Documents can be downloaded in two different formats:

 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 Kennedy'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 offers a discount to Associates 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
 
 
bb_logo
Bldg. 22 Room 105A
AAVA Research 151
2215 Fuller Road
Ann Arbor MI 48105-2399
P: +(734)845-5244
Pager: 734-936-6267 – pager # 9198
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.