Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"


The KDA's mission is to inform, support, educate, fund research, and find a cure for Kennedy's Disease 


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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.

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The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts.

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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.

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It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers.

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golfscramble 4thannual

The 4th Annual Texas Golf Scramble was held at Cypress Lakes Golf Course in Cypress Lakes, TX on September 27, 2014.  It was another BIG success - raising over $32,000!!! This money will go to the Kennedy's Disease Association and will be used to fund research grants and education.  

Here are some of the highlights of the day:

  • Over 74 golfers
  • Over 100 total attendees
  • Auction raised over $10k alone
  • 56 hole sponsors raising over $20k
  • Total profit over $32k, bringing 4 year total to over $90k

The Kennedy's Disease Association's Board of Directors would like to express our sincere appreciation to the entire Golf Scramble Committee consisting of:

  • Louise and Charley Goforth
  • Dana Mowe
  • Lori and Chillie May
  • Mike and Verna Hoke
  • Murray Williams (past KDA Director)
  • Krissy McClaren
  • Jamie Zbranek
  • Ed and Nancy Noack



For more pictures of the event:  Click-here


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As we prepare for the final push to pull off our 3rd Annual Kennedy's Disease Golf Scramble Fundraiser, the highlight of our effort appeared from out of the blue. A businessman from the Northeastern U.S. received word or our fundraiser and promptly sent in a $100 donation. As he made his donation to Kennedy's Disease Golf Scramble, he discussed with his 7 year old son, Ethan, what he was doing and why he was doing it. Ethan decided he wanted to help with the effort and devised a plan to make and sell bracelets. He went to work cranking out bracelets and the first report that we got was that he had sold 20 bracelets raising $200 for Kennedy's Disease. That was yesterday. Today, the number has doubled to 40 bracelets and Ethan has had to pick up production and solicit family members to help in the manufacturing process. Dad provided the information that inspired Ethan, but this is truly a case of “A little child will lead them.”  We don't know where this will end up but Ethan's goal is to send us $1,000. From the responses we have received, I think he will far exceed his goal. Ethan is also working to get as many bracelets to us as possible so that our golfers and other attendees on Saturday can participate in the inspiration of Ethan, a 7 year old who has truly made a difference. We are trying to get Ethan's bracelets up on our website,  To make a secure donation on the KDA website using a credit card, go to the home page and click the donate now button, then click the 'Network for Good' button.  Be sure to fill in the 'Designation' box with "Ethan's Bracelets".

09/26/2013 Update: Another strong day of orders!! Ethan's accountant, also his dad, just reported sales have ballooned today to $1,370. The production manager, his mom, is recruiting support for Ethan's bracelet production. Also of note first order received in Texas today and report is they are beautiful!!  Stay tuned!!

09/27/2013:  This just in... Ethan is now the 2nd largest individual sponsor of the KDA Golf Scramble!


So you want to raise oodles of cash for the Kennedy’s Disease Association.  Here are some ideas to get you started.

Basic Steps

  1. Create an online fund-raising page. Create a web page, send the link to your family, friends, co-workers, parishioners, team mates, etc. and collect donations via credit cards online. It's easy and simple, and eliminates spending a lot of time sending letters, calling people, and organizing big events. Check out
  2. Ask for money. Write a letter explaining your cause, why you are involved, who is to benefit, etc. It's a good idea to request a specific amount or set different levels. ($20 = Silver, $100 = Gold, $500 = Platinum, etc.) Send your letter to everyone, friends, family, coworkers, neighbors, dentist, teacher, and anyone else you interact with.
  3. Hold a small event. Write down the people you know nearby. Do you know any musicians or celebrities who would play a benefit show? Ask a club you frequent if they would be willing to set aside a special night where a percentage of the door/drinks goes towards your cause if you get people in the door.
  4. Have an auction. Silent auctions are the easiest to organize and often bring the greatest returns. Ask local retailers if they would like to donate goods or services. They get a nice tax write off, advertising and good PR. Have stuff for as many price ranges as you can find. Spa treatments, hotel weekends and gift certificates are big sellers.
  5. Hold a 50/50 raffle. Charge $2.00 dollars a ticket to enter. The winner gets half the money collected. For example: You get 100 people to buy a ticket at $2.00 each. That is $200. The winner gets $100 & your charity gets $100. You can also tack on any other prizes you can get donated, like gift certificates, to make the raffle more appealing. The more prizes available, the more likely a person will win something!
  6. A good way to easily raise money for your chosen charity is to get a local shop to sponsor something, such as the leftover cakes in the bakery. You can then sell them the next day.
  7. Be creative in your fundraising ideas. Consider including an online component to your fundraising efforts. Create a web page, send the link to your family, friends, co-workers, parishioners, teammates, etc. and collect donations via credit cards online. See
  8. Most importantly, remember to be creative and to have fun while fundraising!


  • Be creative. People are "hit up" for money from every angle. Stand out.
  • Be honest. If you are raffling off a $10 gift certificate to Denny's, don't advertise a glamorous evening out for two.
  • Say thank you. If people donate anything, thank them as if they gave a million. If they don't donate, thank them for their time. They may donate next time.
  • Inspire donors. People will not donate money unless they believe in the cause. In any fundraising activity, clearly state your vision and why people should join you in this cause.
  • Don't take a "no" personally. Some people can't give, some don't want to. Either way, it is not a personal attack on you or your organization.
  • When asking for help you might get many rejections before you get a "yes".

Wanna Race?

By John Coakley, KDA Vice President (Edited for Website)


Sounds like something I heard about 65 years ago when I was 6 and able to beat most of the others in our neighborhood; seems like yesterday. Back then it was easy: draw a line in the dirt with a stick and another one far away for a finish line. Ready-Set-Go! There was nothing to it. That was then.

In September 2012 Sarah Kawa, one of my daughters, says she wants to initiate a 5K race and do it to benefit the KDA. She is a RN working with high-risk pregnant women who are confined to their homes.  Sarah planned it for 8 months with the help of family, including her sister, Clare Hoerl, and a few new friends including, Phil Lang, a seasoned race director. Add in a former neighbor’s Mom, Arleen Dinneen, who is absolutely invaluable sharing her years of putting on 5K and 10K races for other non-profits in Maryland.

The work begins … :

  • Pick a name for the race: The event’s title, Queen Anne’s Race, is a pun on Queen Anne’s Lace which was my mom’s favorite flower.
  • Secure a location and date.
  • Develop and continually modify a preliminary budget.
  • Finalize County permit – Note: They need an IRS non-profit letter dated within 10 yrs. Call IRS & request updated letter: the KDA has one from 11 years ago. Send new IRS letter to the County.
  • Sign contract with the county for the rental of Community Center
  • Sign another contract for the race course.
  • Go to head of Recs & Parks to plead case for a reduced fee.
  • Design and print Race Entry form and Sponsor Form.
  • Send out emails to everyone in contact list.
  • Organizing volunteers.
  • Secure Event Insurance.
  • Set up a ‘race’ bank account and deposit ‘seed money’.
  • Design and order the logo for the race caps.
  • Design the logo for the annual event – design the brochures, the race shirts.
  • Ask the community businesses to sponsor the race.
  • Plot the exact course with the County, part on paved bike trail and more in and through the woods
  • Stuff about 200 bags with giveaways donated by local businesses
  • Pray for success and good weather


Well, it was a success! We had the most beautiful day of this year. Family from Ohio, friends from PA, doctors and researchers from the NIH and from Thomas Jefferson University in Philadelphia, and a MD from a hospice in Lancaster, PA drove 2 hours just to get here by 7 AM to register.  We had 168 registered runners! All were thrilled with the course and that we had an indoor venue with hot breakfast donated by Whole Foods Market, indoor plumbing, great fellowship and plenty of water donated by Nestle Waters. A raffle for a custom Ray Lewis portrait created by Presley Paintings was responsible for over $500 being donated to this event. Thanks to all of you!

Over $13,000 was raised for the KDA thanks to Sarah and the Coakley clan and friends.  THANK YOU!


So you are interested in organizing a walk-run event to benefit the Kennedy's Disease Association

Below are some basic steps to help you get started.

Basics Steps

  1. Set a venue. Where are you going to have your fundraiser?
  2. Ask your local council to block off roads/paths etc. to run/walk along.
  3. Arrange when the event would take place and what time.
  4. Contact local police and ambulance (NHS) to support the events security and safety of runners.
  5. Solicit help. Invite those who would be interested in your event and giving their time.
  6. Advertise the event. Use online social programs like Facebook, newspapers, and local radio and television stations.  Create an invitation or a ticket to be mailed (or emailed) out.
  7. Prepare a program that your guests are going to enjoy. Call a local entertainer or a clown for the kids. You want to make your event an enjoyable and memorable experience.
  8. Encourage participants to create an online fundraising drive to raise money for the nonprofit.
  9. Approach organizations and businesses that would be willing to donate prizes for your fundraiser.
  10. Organize any other details. Anything like banners, decorations or catering. Also, an added incentive for guests to donate are raffle prizes.
  11. Team up with a group of your friends and make it even more fun. The possibilities are endless!
  12. Have a good time!