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.
|Others Making a Difference|
they just have the heart."
Queen Anne's Race
- The 2013 Queen Anne's Race was a great success. The event raised over $13,000 for the KDA. Read More
KDA Golf Tournaments
The first Kennedy's Disease Association 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
The second Kennedy's Disease Golf Tournament was held in September, 2012 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
Over $32,000 in two years!
The KDA sincerely thanks the golf tournament fund raising team
If you are interested in holding your own KDA golf scramble,
the organizing committee has developed
a process to help insure your success.
Below are just some of the special people that have helped the KDA fund research grants and educational symposiums
|Ed Meyertholen ran in
several marathons including the Boston Marathon, Motorola,
and San Antonio. Read More
|Beth DuVall has run three half-marathons,
the latest in May 2011.
|Sean Blasko has participated in several triathlons, the latest was
the Canadian Ironman.
|Devon Perry has ridden
her bike in several races ...
most recently to help the KDA.
|Dave Heraper ran a race in 2010. He ran the race two reasons: (1) to improve my own health, and, (2) to promote awareness and funding for the KDA.
Tara & Erin Mills - Running Erin's 1st Mini-Triathlon. Tara and Erin Mills met their goal of $1,000 in funds raised through sponsorships and
Tom Goynes and Sandy Goynes - "Paddling for Kennedy's Disease"
Tom Goynes and his daughter, Sandy Goynes, are experienced Texas Water Safari veterans and they paddled again in 2001 in this 260-mile long river adventure. However, this time, Tom and Sandy paddled for Kennedy's Disease. They secured pledges and donations for the Kennedy's Disease Association. Tom & Sandy Finished 16th out of 119 Boats with a finish time of 51 hrs 24 min. Read More
- April 2 thru 4, 2011 - Sean Blasko held a plant and tree sale to benefit Kennedy's Disease research during the community-wide yard sale in Austin, TX
- May 15, 2011 - Carla and Stan Highe and family sold 'KDA muscle shirts' at the Gilmore Car Museum "Dust Off" car show and swap meet. in Kalamazoo, MI
- Mike Goynes "Re-organizing Chat Transcripts for Easier Reading" - Immediately following each KDA chat, Mike Goynes takes the raw transcript file and cleans it up for easier reading for us all. Thank you Mike.
- Cookbook Sales
- Annette Clipman, Anita Johnson, Vern Quimby, Chris & Jodee Coulter, and Alison Pasiuk, Susanne & Terry Waite -- "Cookbook Sales"
- Annette Clipman, past-KDA Vice President and Director of Fundraising, was able to secure free press in her hometown for selling KDA cookbooks and Entertainment books. She also has negotiated the free printing of KDA business stationary. Click Here to see the newspaper article.
- Anita Johnson, a member of the fundraising committee, went door-to-door with cookbooks and sold to many friends, family and co-workers.
- Vern Quimby, a gentleman with KD, decided he could help sell cookbooks through his mobile home park's magazine, so he submitted some text and an order form instructing individuals where to send their order and check.
- Chris & Jodee Coulter, Murray and Karol Williams and Alison Pasiuk sold multiple cookbooks to friends, family and co-workers! Susanne & Terry Waite, the KDA Founders, have sold numerous KDA cookbooks and Entertainment books to friends, family and co-workers around the country. They even set up a booth at a local Chili Cook-Off and in front of grocery stores.
The following businesses have contributed services or goods to the Kennedy's Disease Association. We thank them for their support and encourage you to utilize their services as they have helped us tremendously.
Zebra Graphic Designs
Linda Stephens was the designer, developer and project lead for the new KDA website.
Robert Beyer - Website Hosting
Robert Beyer has helped to make a difference with the KDA by hosting the Kennedy's Disease Association Web site free of charge from year 2001 up until November 2002.
Duffy Design Works
The KDA would like to thank the team over at Duffy Design Works for the donation of design and web services to the KDA. From November 2002 through 2009 Duffy Design Works hosted the website.
(Supplied letterhead stock and envelopes at no charge)
Cadmus Professional Communications
(Printed 12,000 KDA Brochures at no charge)
Donald Blyler Offset
(Printed 5,000 Holiday Cards at no charge)
Evenas Graphics - Graphic Design Firm
Sherman Oaks, CA
(Designed the KDA Logo, business cards, letterhead, envelopes, donation, holiday and thank you cards at no charge)
Hess' Graphic Works
(Produced two 5' by 2' banners for the KDA at no charge)
Halliburton Foundation Inc
(Giving Choices Campaign)
Honey Brook Sporting Goods - Screenprinting and Embroidery
Honey Brook, PA
(Printed 48 t-shirts and golf shirts for the KDA at no charge)
Allegra Print & Imaging - Printers
(Printed Letterhead and Envelopes for the KDA at no charge)
Prestige Color - Printers
(Printed Thank You card and mailing labels for the KDA at no charge)
Red Rose Awards
(Donated an appreciation plaque at no charge)
Robert C. Miller Printing - Printers
(Printed 2,500 business cards for the KDA at no charge)
Screen Printing Plus
(Donated and printed logo on 100 tote bags at no charge)
(Donation of hosting the KDA website free of charge)