My Turn by Pat Cooke: Make sure ice bucket ALS donation goes to research

  • Posted: Monday, August 25, 2014 12:15 a.m.
    UPDATED: Monday, August 25, 2014 12:24 a.m.

With all the hype and interest in the ALS Ice Bucket Challenge, I would like to issue my own challenge, but first, a little history.

Our son Tom was diagnosed five years ago with ALS. Needless to say, our family was devastated, as we were fully aware of the ravages of this disease having known a friend of the Post and her battle with ALS.

We packed up, left our house in the hands of good friends and joined our son in his journey to defeat this insidious affliction. For two years, we watched the slow theft of his faculties ó first, muscular atrophy, then mobility, ability to swallow, speak and eventually breathe.

We were fortunate to have the local ALSA provide a motorized chair and eventually a voice-generated computer, through which Tom was able to communicate, and for that we are eternally grateful.

While living in Vero Beach, Fla., with our son, we happened upon the Community Church of Vero Beach where the parents of Bruce Edwards, Tom Watsonís caddy, belonged. The minister, Dr. Bob Baggott, who had visited Tom regularly, mentioned to Dr. Jay Edwards that he knew of a family that might appreciate some advice.

Dr. Edwards very graciously called and talked at length, offering what comfort he could.

Tom lived two years and three months and passed away three years ago this month.

Tomís friends participated in two Walks to Defeat ALS, raising a total of over $20,000 for ALSA, but as I researched the charity site, I found that only 27 percent of this money is dedicated to research, 19 percent to patient services and the rest goes to administration, education and fundraising.

I contacted the Bruce Edwards Foundation and received a personal letter from Bruceís sister, Gwyn Dieterle.

In part, she said this:

ďAs far as your donation, all contributions to the Bruce Edwards Foundation go to research. Our primary beneficiary is the Robert Packard Center for ALS Research at Johns Hopkins in Baltimore. Tom Watson and our family are huge supporters of their philosophy of a collaborative approach to research, and of the dedication and drive of the centerís director, Dr. Jeff Rothstein. He remains optimistic and dedicated to finding treatments and a cure.

A small portion of our proceeds go to other research facilities as well, including ALS TDI in Cambridge, Mass. We are a complete nonprofit, with no paid staff, and our only overhead is the expenses we incur for our biannual fundraiser (the Bruce Edwards Celebrity Classic) and to maintain our website and donation process. Should you choose to make a donation to us, you can be assured it will go towards research. Or, you should feel free to donate directly to the Packard Center ( if you wish.Ē

And so, although the ALSA is a very worthy cause, I would rather see my dollars go toward RESEARCH to find a cure, and I challenge those who desire to contribute to send their donations to one of the above groups.

Pat Cooke lives in Salisbury.

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