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Valrico, FL USA

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THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC
March 7, 2009

Parent Project Muscular Dystrophy has been our saving grace. When our son, Zachary was diagnosed at age six with DMD, we were told quality of life is all we could give him, nothing more. This infuriated us, surely we could do more for Zach. When it came to knowledge of Duchenne MD, we saw mediocre doctor after mediocre doctor in our own state. Our worries of hope being gone was a reality, until my extended family got involved while hearing of our frustrations. One of my sisters found a wonderful neurologist in her state of MO, we had to travel, but at this point we were desperate for help. Another sister found PPMD and told us of an upcoming conference they hold every year for parents. One or both of us has attended every conference for the past 8 yrs. now. It is truly amazing when you can sit down for lunch at one of these conferences, only to find you are sitting with a doctor doing research for your son. You finally feel good, hope has arrived! I could go on and on about what PPMD has done for us parents and for our children. The staff at PPMD is a real family, to eachother, as well as us parents and our kids. They know us by first name, and our kids and what is going on in our lives. One amazing example of this is when we took our son a thousand miles away to have spinal fusion surgery with a top Orthopaedic Surgeon (which we would not have found without PPMD as well). The day of this 6 hour surgery my husband and I were just beside ourselves when they took our little boy through the doors out of site, out of touch, but not out of mind. We had family with us, but did they truly understand the dangers involved in this surgery, or any surgery for a patient with DMD. Then just as we were pacing with tears in our eyes, in walks Pat Furlong, the PPMD Founder and President herself, she sat with us all day. Pat never left our side all the way up to the point of when his surgeon came out to tell us it was over and a success. Pat looked at the x-rays, joined us in asking questions, then gave us all a hug before finally leaving. During the 12 days in the hospital she visited my son several times, and called to check on us all, constantly offering anything else she could do for us. This is Parent Project Muscular Dystophy (PPMD) as we know it, truly amazing! Jackie Smith

The Great!

I've personally experienced the results of this organization in...

my own family. When they work with closely with top doctors, never letting any child or any opportunity fall through the cracks. They also keep us updated by send out constant updates via email. Yearly reports showing where the money is spent.

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

meeting wonderful people who truly understand and live with DMD in their lives too. Making friends and finding a whole new family in PPMD

The kinds of staff and volunteers that I met were...

The absolute best, not only at their jobs, but at being real people with heart.

If this organization had 10 million bucks, it could...

continue the work with the scientists and the pharmaceutical companies to see drugs developed that could help all DMD boys.

Should this review be counted for a specific campaign?

Disney World

When was your last experience with this nonprofit?

2009

MY ROLE:
Client Served & For the past 5 yrs, I run a half marathon, and my husband runs the half and full marathon for PPMD. My husband does volunteer work for PPMD during the conferences.