"Volunteers do not necessarily have the time; they just have the heart."

(Elizabeth Andrew)


Consider sponsoring an event

Our thanks goes out to all of you who are helping us find a cure for Kennedy's Disease

Past Fund Raising Events

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Rare Disease Day Bay Area

Ralph Briones and his family raised over $18,000 for the KDA. A-MA-ZING!  His original goal was $5000 over the weekend which was surpassed on day one.  It was a pleasure to watch the Rare Disease Day - Bay Area event unfold.  The dance, the cooking, the food demos, all so great. 


Dim Sum Give Some

Chef Dan Jacobs has held Dim Sum Give Some fund raising events in Wisconsin and raised over $60,000 to help the KDA find a cure for Kennedy's Disease 



  • Queen Anne's Race

  • Won't you please support this worthy fundraising cause?  Click HERE to go to the Facebook Page.

The 2014 race had over 150 runners competing in this 5K run.  The event raised over $11,000. The first Queen Anne's Race was held in the spring of 2013. It was a great success.  The event raised over $13,000Read More

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Over $21,000 raised in two years!

 The KDA sincerely thanks the Queen Anne's Race Committee for their support


Golf Tournaments


Texas Golf Tournament

The Texas team has raised over $91,000 in four years!

  • The 2014 Kennedy's Disease Golf Tournament was held in September at the Cypress Lakes Golf Club, Cypress, TX.  The event raised $32,095. 
  • The 2013 Kennedy's Disease Golf Tournament was held in September at the Cypress Lakes Golf Club, Cypress, TX.  The event raised $23,000.
  • The 2012 Kennedy's Disease Golf Tournament was held in September at the Jersey Meadow Club, Houston, TX.  The event raised $18,000. The committee members responsible for putting on this exciting event are:  Murray Williams, Johnny Farrell, Ed & Nancy Noack, Charley & Louise Goforth, Jamie Zbranek, Lori & Chillie May, Verna & Mike Hoke, and   Krissy McLaren.  Read More
  • The first Kennedy's Disease Golf Tournament was held in October, 2011 at the Jersey Meadow Club, Houston, TX.The event raised $16,000.  The core committee consisted of Murray Williams, Ed and Nancy Noack, Louise and Charley Goforth, Verna and Mike Hoke and Krissy McLaren.  Read More




New York Golf Scramble

  • The first annual Kennedy's Disease CNY Golf Scramble was held in August at the Beaver Meadows Golf Club, Phoenix, NY. The event raised $8,000.  Read More

 The KDA sincerely thanks the golf tournament fund raising teams



 Others who are racing to help find a cure

Rolling for a Cure!

Bob Tudor has participated in many handcycle marathons to raise money to find a cure for Kennedy's Disease. Thank You, Bob!




Ed Meyertholen has ran in
several marathons including the Boston Marathon. 
Beth DuVall has run three half-marathons.  Sean Blasko has participated in several triathlons. 
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Devon Perry has ridden
her bike in several races to help the KDA.

Dave Heraper ran a race  to promote awareness and funding for the KDA.

Tara & Erin Mills - Running Erin's 1st Mini-Triathlon.

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Tom Goynes and Sandy Goynes - "Paddling for Kennedy's Disease"

Tom Goynes and his daughter, Sandy Goynes, are experienced Texas Water Safari veterans and  paddled this 260-mile long river adventure for Kennedy's Disease.