reflecting back to the advocacy conference/PAAC initial meeting

  Attending the initial meeting of the PAAC in DC this last February was quite an amazing experience. It was our first live get together. I was so very impressed by the knowledge and enthusiasm of the group. We started out having 2 days of meetings and presentations. At he end of those two rather intense days we came together with a consensus of the things we as a committee were going to be tackling.

  One of the things that the group was asked to do was to come up with someone from our group who would be involved in an advisory capacity to the FDA. The FDA was instituting patient testimony as it pertains to the various aspects of MD as it relates to the FDA. I immediately came up with who I thought would be the perfect candidate- Ben Cumbo. After mentioning this to others from the committee, they also thought that Ben would be the perfect candidate. I approached Ben with the idea and of course, Ben in his usual humble manner, said that he would be very honored to represent the committee.

  The next few days we went into advocacy mode. We spent Sunday afternoon prepping for our meetings with our Senators and House Reps. on Monday and Tuesday.

  The culminating event was a lunch and a panel presentation. One of the presenters was Ben Cumbo. Ben talked about the first time he had testified before a Congressional Committee, some 20 years ago I believe. Ben suggested to the committee that instead of spending hundreds of millions on the latest Stealth bomber, maybe they could redirect that money to helping find a cure for MD. I believe more than a few mouths dropped.

  I remember when speaking to Ben how impressed I was. His intellect, and charm certainly shown through. And a very articulate young man to say the least. Unfortunately, Ben is no longer with us- though his physical presence is absent his soul will continue to inspire. Michael Stone

  PS- Ben wrote a blog on 3/31. A MUST READ!

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Comment by Shelly on April 29, 2015 at 4:18am
Hats off for Ben!!!!!!

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