Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"You are not alone in your quest for a treatment and cure!"

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.

KDA Information Guides

Below are four information guides that you might find helpful

Smart Exercise Guides
Social Security - Disability Guide
Financial Planning Guide
Tissue Donation Guide

The "Smart Exercise Guide - Part II"

exercising-1 The link below is a PDF guide that contains 35 exercises recommended by a certified Physical Therapist. This guide has specific exercises for those who are wheelchair bound and for those who are experiencing some problems walking with a cane or walker. Many of the exercises have different difficulty levels to ensure they benefit more people. Once a person gains more strength and confidence, he can move to a more difficult level. The author has personally performed all of these exercises and found them to be very helpful in maintaining and improving his strength and balance as well as providing him with improved self-confidence.

KD Smart Exercise Guide Part II (2009)

The "Smart Exercise Guide - Part I"

The link below is a PDF guide that contains several different types of exercises that have been approved by a neurologist. Many of the exercises have different difficulty levels to ensure they benefit more people. Once a person gains more strength and confidence, he can move to a more difficult level. The author has personally performed all of these exercises and found them to be very helpful in maintaining and improving his strength and balance as well as providing him with improved self-confidence.

Smart Exercise Guide - Part I (2007)

_______________________________________________

The Social Security - Disability Application Process

The application process for applying for Social Security - Disability is often daunting. Proper planning and preparation can help a family move through this process more easily. The following guide contains information, insights and recommendations for preparing for and submitting the Social Security - Disability application.

SS-D Guide: (Microsoft Word Format 272kb) - - - (PDF Format 638kb)

_______________________________________________

Preparing for early Retirement

financial_planning Financial planning is important at any age, but it becomes critically important when you are diagnosed with Kennedy’s Disease because you might have to retire earlier than expected. In the guide, the author will introduce you to the process that, if completed, will help you achieve your financial goals and hopefully allow you to retire early, if the need arises.

Financial Planning Guide (PDF)

_______________________________________________

Help Researchers Discover a Cure

tissue_donation1 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 Donation Guide (PDF)

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