Frequently Asked Questions
A: The Kennedy's Disease Association (KDA) is a totally volunteer non-profit corporation, incorporated in California on Monday, August 21, 2000. The KDA is 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).
Why and when was the KDA formed?
A: Read: The KDA Story.
What are the objectives of the KDA?
A: The Kennedy's Disease Association has been formed with the following objectives in mind:
- Financially support and promote medical research to find a cure for Kennedy's Disease
- Improve awareness of Kennedy's Disease in the medical community
- Create a support system for those living with Kennedy's Disease
- Increase public awareness about Kennedy's Disease and its effects on families
- Share information about Kennedy's Disease for those who seek it
What services does the KDA provide?
A: Click on the following link: KDA Services
How many members does the KDA have?
A: As of November, 2013, the KDA has over 1,300 registered associates living in 50 countries. 65% of our associates carry the defective gene. The KDA also has 99 registered doctors and researchers on its distribution list.
How does the KDA operate?
A: The KDA has a board of directors, elected officers, and a Scientific Review Board (SRB). All volunteer their services. The SRB is made up of four researchers and two other members representing the business and academic communities. The researchers are all involved in Kennedy’s Disease research. Its roll is to review current research, provide direction for the funding of research grants, and be a resource to the board of directors.
Who are the researchers on the Scientific Review Board?
- Dr. Kenneth Fischbeck – Bethesda, MD - National Institute of Health. A leading researcher, professor and educator on the subject of Kennedy's Disease; a co-discoverer of the Spinal Bulbar Muscular Atrophy gene.
- Dr. Diane Merry – Philadelphia, PA - Thomas Jefferson University. Dedicates research team to Spinal Bulbar Muscular Atrophy.
- Dr. Al La Spada – San Diego, CA - University of California - San Diego. Co-discovered the Spinal Bulbar Muscular Atrophy gene and continues to research Kennedy's Disease.
- Dr. Andrew P. Lieberman – Ann Arbor, MI - University of Michigan. Researchs inherited neurodegenerative diseases. Director of the Neuropathology Core for the Michigan Alzheimer's Disease Research Center.
- Dr. Paul Taylor, Memphis, TN - St. Jude Children's Research Hospital. Researchs neurological diseases.
How is the KDA funded?
A: The KDA is funded by donations and the sale of certain products including cook books, coffee mugs, calendars, etc. Locally sponsored fundraising events are especially helpful in supporting the KDA.
Does the KDA help support Kennedy’s Disease research?
A: Yes, in several ways. First, as of November 2014, the KDA awarded $570,000 in research grants to help find a cure or treatment for Kennedy's Disease. It also funds KDA conferences where researchers and those afflicted with the disease come together to share experiences, current research, and knowledge. The KDA financially supports certain Kennedy’s Disease Research conferences. It also worked closely with the National Institute of Health (NIH) to provide preliminary information on the feasibility of the Kennedy’s Disease clinical drug trial that is currently in progress. It supports several Kennedy’s Disease research labs across the country by providing tissue samples when human cells are needed to support research and testing. Kennedy’s Disease tissue is currently stored at the University of Michigan Tissue Bank.
Besides supporting research, how are the donations used?
A: Because the KDA is a totally volunteer organization, over the last eleven years (2003-to-2013) 91¢ of every dollar went towards Kennedy’s Disease Research Grants (81¢) and Education (10¢). During the same period, the KDA also supported Kennedy’s Disease education through the mailing of 12,000 information packets to Neurologists. We also funded five KDA conferences and research symposiums as well as supported certain other Kennedy’s Disease research conferences. The KDA only spent 10¢ of every dollar on Operating Expenses. These expenses include the maintenance of our KDA web site, our message forum, the three times a month Saturday chat rooms, office supplies, office equipment, postage, insurance premiums, banking fees, ISP charges, etc. To read more about where the money is spent see the following link:
How are research grants awarded?
A: 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.
Who has received KDA research grants?
A: Follow this link to read more about what research was funded: KDA Research Grants
How does the Tissue Donation Program work? Is the tissue ever sold?
A: 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 KDA has created a program for interested families to donate tissue for Kennedy’s Disease research. The program is similar to an organ donation program, but is different because of the formalities required and the specific use for the tissue. Tissue is stored at a tissue storage facility and is provided to qualified laboratories 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 Scientific Review Board (SRB). The KDA is hopeful that these studies will lead to advances in the diagnosis, treatment, and eventual cure of Kennedy's Disease. Tissue is never sold. Tissue is only provided to qualified laboratories that are engaged in Kennedy’s Disease research. More information about Tissue Donation
How do I join the KDA?
What is the KDA chat room?
A: The Kennedy's Disease chat room was designed to be a cost-effective way for anyone who would like to discuss living with KD. Chats are scheduled for the first and third Saturday of each month at 10:30 A.M. Eastern Time. You must register before joining in on a chat. You can register and also log on to a chat by clicking on the following link: KDA Chat Room.
Do you keep copies of past chats with doctors, researchers, and others?
A: If you missed a chat, you can read the transcripts at: Chat Transcripts.
Is there a place I can ask others questions or share my experiences?
A: Yes, the KDA has a forum. There are many topics posted covering a variety of subjects. The first time you visit the forum you must register. The forum is located at the following link: KDA Forum. The benefits of this service include:
- No advertising/pop-ups.
- Email notification when someone has replied to your message.
- Improved ease of use, message handling and storage.
- Private messaging is a means for community members to talk to each other outside the realm of the public community. Members never have to know each other's email, so this is a more secure way of having a private conversation within a community. Multiple members can participate in a private message.
I heard that exercise was bad for a person with KDA. Is that true?
A: No, in fact, several neurologists confirm that light and ‘smart’ exercising is good for your muscles and motor neurons because it stimulates them and keeps them functioning longer. Another benefit of exercise and stretching is that it can cause ‘cell inhibition’. However, any type of activity that overly taxes your muscles could be detrimental to your condition. The key is to just do what the body feels comfortable doing and to never exceed your capabilities. The goal is to stimulate the healthy muscles and motor neurons without harming them. Remember to always consult with your doctor prior to beginning any exercise program. There is an exercise guide designed by a physical therapist available at the following link: Smart Exercise Guide. There are other exercise programs also available at this link: Exercise Tips.
I have Kennedy’s Disease and am considering going on disability. I have heard that applying for and being awarded Social Security – Disability compensation is quite difficult. Where can I find help for this?
A: The KDA has developed a guide for applying for Social Security – Disability (SS-D). Feedback from associates who have used the guide have been very positive. However, this information guide should not be used as the only source for preparing your Social Security - Disability application. It is recommended that you consult with the Social Security Administration, your neurologist, and if desired, a legal professional before starting the application process. In developing the guide, the Social Security Administration's website (SSA-Disability) was used for much of the format and information provided within. For an overview of the process, click on the following link: SS-D Process Guide and Tips.
Q: What is the KDA memorial page all about?
A: The KDA memorial page honors those who have left us. If you have a loved one with Kennedy's Disease who has passed away and would like to have him/her added to the memorial page, e-mail the information to the KDA and, if possible, include a picture. If you do not have a picture on your computer to send via e-mail, you can mail it to us via regular US mail. The KDA can scan it and return the original to you.
How do I donate to the KDA?
A: Here are seven ways that you can help the KDA:
1. By Credit Card -Currently there are two ways of making a tax-deductible credit card donation. Both services use Secure Servers to process and route credit card payments to non-profit organizations. Go to this "Ways to Pledge" page to Donate Today and select a service.
2. By Mail - Send a tax-deductible donation (check or money order) to:Kennedy's Disease AssociationP.O. Box 1105Coarsegold, CA 93614-1105
3. United Way - Since the KDA is not listed as a national non-profit on the United Way pledge form, all a person needs to do is contact their local chapter and explain that you want to give to the Kennedy's Disease Association. They will give you a form to fill out which asks for the organization name and contact information. Give the form back to the United Way and they take it from there.
5. In Remembrance - Remember the KDA in your will, living trust or memorial request.
6. Donate Your Time or Services - Get involved with the Kennedy's Disease Association. For more information, contact the KDA at Contact the KDA.
7. Canadian Donations - Our Canadian friends can now make tax-deductible donations directly to a Canadian laboratory that is conducting Kennedy's Disease research. For details, go to the "Ways to Pledge" page to Donate Today and see the “Canadian Donations” section.
Does the KDA need volunteers?
A: Since the KDA is an ‘all volunteer’ organization, we are always looking for volunteers for our committees such as Fundraising and Support Groups. If you are interested in volunteering, please contact the KDA using one of the methods listed below. Any service you can provide will be much appreciated.
How do I contact the KDA?
A: You can call, mail, or email the KDA:
The easiest way is to use the Contact Us form.
Kennedy’s Disease Association, Inc.
P.O. Box 1105
Coarsegold, CA 93614-1105 (U.S.A.)
Phone: (For Outside the US)