Kennedys Disease Association

My name is Delores and I live in Saskatoon, Saskatchewan, Canada. My family has quite a few members that have been diagnosed with Kennedy's. My mother comes from a huge family of 12 and many of them were females and carriers. I have 5 known cousins who have the disease but were never diagnosed until after my oldest brother was diagnosed about 10 years ago. In my family, I have 3 brothers with Kennedy's and now, my 28 year old son, was just diagnosed earlier this year. When my brother was diagnosed, I also got the blood work done to see if I was a carrier and unfortunately I tested positive. The genetic counselor offered a lot of support. My son who is diagnosed felt that he might have had the disease as well when he started noticing tremors and muscle cramping. That is when he told his doctor about the hereditary disease and got tested. According to the neurologist, he is the youngest known with the condition. So, the neurology team is studying him. He has had many medical appts since....He is taking it much better than I am..I guess because he "knows". He said the "not knowing" was the worst part of it...but because there are too many of our family members with this, he was more accepting of it.

I found the superbly informative KDA site intially by googling KD 2 years ago finally -after 35 years worsening and reporting to doctors and uncertain neurological clinical specialists - having (UK) NHS DNA test confirmation in 2001, aged 66. After diagnosis a clincal geneticist -who'd never encountered KD - said that I might be wheel chair bound in "later years". Other than being told there was no cure, no other information was available. Luckily my great neice holds a PhD in neuro-sciences, being a university lecturer, obtained far more details and arranged for my maternal family's female testing. (which took NHS forever). Although Im never around for chat room sessions (being In the UK) they are very informative and inspiring.

This is One SUPER Organization and a Non Profit one at that. When I was diagnosed, in 1999 there was NO Information available at all. A very scary spot to be in. I had never heard of anyone with this problem. The KDA web site was a source or real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the in formation about the research going on gave me hope. After I attended my first conference I felt much better. Seeing tthe varing degrees of how the disease impacts everyone differently.

As a retired otolaryngologist, and a patient of Kennedy´s disease, my contact with Kennedys association has made me start as an informer, of this rare disease, within, my friends, neurologists.

Hello, my name is Peter D Glick and I live in Kentucky. I was diagnosed in the early 1980's with ALS. My mother passed away in 1982 from complications of ALS. My desease progressed very slowly and in 1997 I was rediagnosed with SBMA or Kennedy's Disease. My Neurologist had a single page of information on the Disease. Thanks to the KDA website and linked information sites I found many pages of information. At the KDA Conferences, starting in 2001, I gained additional information and support. Several years ago I participated in a fund raising effort and feel proud that the resulting money collected helped to fund more research directed by the KDA. KDA is an excellent group of caring and dedicated members that are always there if more support and hope is needed.

Hi, my name is John, from Barcelona, Spain. When I was diagnosed KD in 2000 I know nothing about it. I do not succed looking for another KD suferers in Spain in order to share experiences. Surfing internet I found the KDA and for me was like an island for a castaway. Thanks to them I found myself less alone than before, I have a lighthouse to find my way. Thanks guys, you are doing extremely well.

KDA was a godsend to me shortly after I was diagnosed with Kennedy's Disease (in 1996). KDA's web site contains information about the disease, personal experiences, and much good advice. The web site acted as a central organizing influence for the sharing of information and brotherhood. Without KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable. KDA provided a point of communication for the NIH, which performed a clinical trial with subjects recruited via the web site, in which I participated. KDA's research donations have been seminal in increasing the knowledge of this disease; at the KDA conferences, attendees can participate by learning more about the gritty details of the biology of the disease. The state of the art for KDA progresses through the KDA's contributions. Weekly chats, forums, and hyperlinks to important sources of information round out the features of KDA that I use. It is an awesome organization.

The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. Families can find out about how to identify it, how the disease is transmitted and what are the latest remedies for the associated symptoms. There is simply no other source easily available to the public.

When my husbands brother was found by the doctors to have Kennedys, I went on the site KDA (kennedys disease association) to see if my husband could have it. It helped to tell about the testing they do to find out if you have KDA. You can have a DNA done. My husband had the testing done over 6 years ago and he now knows what to expect with the disease he has. They have all the information you will need in one spot and at your fingertips. Most people like my husbands brother are misdiaginosed with Lou Gehrig's (ALS). But with the KDA site we found out different. It is a very helpful site with loads of information. JoAnn

I have just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. KDA mantains an excellent website that explains the disease. I found details on symptoms, the cause and excercises I could do to maintain my strenght.

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.