Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every few days a baby boy is born with this DNA defect"

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.

2011 - July 2, Unscheduled Chat

Kennedy's Disease Chat Transcript 07-02-2011

Topic: Unscheduled Chat

Host: None

UTE		Good Morning Stewart...whats up with you for the 4th?
stewart		I'm in florida on vacation tomorrow I return to soCal
UTE		Where all did you go in FL?
stewart		I'm in Cape Coral right now it's raining still HOT.
UTE		Yesterday, U o Utah offically became part of PAC-12...their excited to be planning USC..I think on Sept 10
stewart		I've been here for two weeks, having a great time it just hot here. My son (13yrs) likes USC.
stewart		quiet today everbody sleeping in?
UTE		My step-mom lives in the Fla Keys in the winter but the summer's in my home state of Michigan where it's cooler
UTE		Maybe KD decided to move chats to once a week?
UTE		a month!
stewart		I can understand why it does get warm and plenty of bugs.
stewart		Now I do remember something about once a month.
UTE		Often FLA uses those big old firefighting planes to drop misquito killer
stewart		I saw a DC3 fly over dropping the stuff.
stewart		Any word on that exercise study
UTE		Yesterday I had a weird incident in my powerchair...I leaned over in front of the TV set to quickly take something away from the dog and accidently hooked my bathrobe on the controller..sending me and my 350
stewart		Good morning Terry
TerryW		This weekends chat was beingskipped because of the holiday
UTE		Terry Happy 4th weekend
TerryW		but the room was still open for anyone to use
TerryW		UTE thats scary
TerryW		coulld have sen you flying into the TV
TerryW		sent
UTE		Yah...it was one of those heavy big old tv ...I could haVE BEEN KILLED
TerryW		I had a nice fall this morning
TerryW		went to get out of bed, rollled over and went to stand and as soon as I tried my legs collapsed and I fell like a sack of bricks
UTE		tERRY...did you bounce good...no bruses or soars?
TerryW		scrapes and banged head from the wall
TerryW		twisted ankle
TerryW		I am ok though
TerryW		ute i AM GLAD THAT YOU ARE NOT HURT
UTE		you should see the dent in the wall from pushing the tv...and bruised feet wedged between the 350 lb chair and hundreds of pound TV
TerryW		OUCH
UTE		Bruce was mentioning getting new neck weakness...have either of you gotten a weak neck?
stewart		I'm very fortunate at this stage only falling a couple of times if I miss step one leg does'nt have the strength to do the job. I quess this it what is in my future. being careful isn't enough it seems.
TerryW		yes, when I am doing something looking down a lot like unpacking boxes or trying to pull weeds
TerryW		If i do it for more than 10-2 mins I cant lift my head back up to normal
TerryW		have to use my hand to push my head bak up
UTE		Hows the MichigaNDER?
TerryW		10 - 15 min
Stan		Hi guys, sorry I'm late
stewart		Yes, my neck gives me problems, to painful to move for day gets better then it returns
TerryW		no chat scheduled for today but some of us showed up anyway
TerryW		yes stewart, takes about a day to recover
Stan		Wasn't sure, didn't see any note one way or the other.
TerryW		on the chat page there is a schedule and I think it says that todays chat was going to be skipped
TerryW		sorry everyone, I have guests here so I need to go, just wanted to drop in
Stan
UTE		Everybody have a great 4th
stewart		My body is still itchy not the same place it moves around, worse at night affects my sleep,
stewart		Have good one