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

(Elizabeth Andrew)


Please Consider sponsering an event!

You can contact the KDA for ideas or help in planning your fund raising event.

Our thanks goes out to all of you who have helped us find a cure for Kennedy's Disease.

Past Fund Raising Events


The Great Road Trip - Los Angeles to Rome 

The little red 2CV traveled about 7,000 miles, visiting 18 cities in the United States as well as Toronto, Canada, Poundbury and London in the United Kingdom, and Milan and Rome in Italy. The 2CV’s stops in Buffalo and Philadelphia made the local TV news, and the Great Road Trip was the subject of several newspaper articles in Milan, where we were greeted by an official of the Milan City Council. Thanks to generous sponsors and donors throughout the past three months, we also met our financial goals. After expenses, the Great Road Trip raised over $100,000 for research into this devastating disease. To see photos and videos of this event, visit https://thegreatroadtrip.net. The photo on the left is a picture of KDA co-founder and President Emeritus Susanne Waite with the 2CV in front of Mel's Diner in California.


RareDiseaseDay2021FundRaiser 3

Rare Disease Day Bay Area

Ralph Briones and his family raised over $29,000 for the KDA. A-MA-ZING!  His original goal was $5000 over a 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 $85,000 to help the KDA find a cure for Kennedy's Disease 



  • Queen Anne's Race

  • The first Queen Anne's Race was held in the spring of 2013. It was a great success.  The event raised over $13,000.  


EdMontie5kEd Montie 5K  Race

The Montie family has raised over $59,000 to help the KDA find a cure. 



Golf Tournaments


Texas Golf Tournament

The Texas team has raised over $127,000 in four years!

  • 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. 


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.  

 Others who are racing to help find a cure!


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




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. 
Ed_Meyertholen_Boston_Marathon Beth_Duvall_Running Sean_Blasko_racing

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.

devon_perry Dave_Heraper tara-erin3