KENNEDYS DISEASE ASSOCIATION
November 15, 2010
Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. There was no treatment or cure and none of my regular doctors knew anything about the disease. I had originally been diagnosed with ALS, but fortunately found a neurologist who recommended that I visit the University of Pennsylvania and see a Dr. Kenneth Fischbeck. He was an excellent resource to me, but I still was not able to really express my personal fears and concerns.
After searching the Internet for answers, I came across the Kennedy's Disease Association (KDA) and decided to attend a bi-weekly chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing. They were so open and helpful that I went away feeling like I was no longer alone and that there were others out there who were experiencing my symptoms and emotions, and they were there to help.
In 2002, I attended an annual KDA conference in Baltimore. Meeting with 40-50 others who were living with this disease as well as meeting 15 doctors and researchers who were trying to find a cure changed my life. I once again had hope. Later that year I joined the board of directors and have served on the board ever since.
This small, all-volunteer, non-profit has 942 associates and 78 doctors and researchers. 90 cents of every dollar is spent on Kennedy's Disease research and education. Everyone serving on the board, the officers, and all committee members are volunteers and do not receive any compensation. The KDA website is known as the greatest resource in the world for Kennedy's Disease related information and support. The bi-weekly chat rooms are a source of inspiration and information and support. Several chats a year have doctors, researchers, and other experts who are guests. Chat room transcripts are available for those that cannot attend a chat. The KDA community forum has hundreds of "page reads" a day and is another excellent source of information and inspiration. The newsletters are filled with research updates, personal stories, and helpful information.
Serving on the board is my way of giving back to those who were there for me when I felt alone and in need.
Why didn't I give the KDA a five-star rating? Good question. It is because I believe we could still do more if ... we had greater donations and more volunteers. We could then be an even greater resource and support organization; and perhaps be able to fund the research that finds that treatment that is so desperately needed by those of us living with the disease, as well as our children and grandchildren.
I've personally experienced the results of this organization in...
Mental and emotional support. They are there for you when you need them. Their website is filled with helpful information ... and often information that your doctor needs to help support you. Research grants have funded many projects of which two look extremely promising and will have clinical trials in the next year or so.
Ways to make it better...
If I had to make changes to this organization, I would...
As I mentioned in my review, we need more donations and more volunteers that are willing to give their time to improve the organization as well as our ability to support others in need.
Board Member & I am editor of the newsletter, publish the "Living with Kennedy's Disease" blog, answer questions and provide support for those in need, serve as host on several chat rooms a year, help to raise funds, maintain the KDA associates database, published sever.
Review from Guidestar