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Review for The Parent Project for Muscular Dystrophy Research Inc, Middletown, OH, USA

Rating: 5 stars  

I'm a fix it Dad, no job to big or small. I fix broken toys, broken retail stores and offer help to "broken" people. When we found out about our son having Duchenne Muscualr Dystrophy, I came to realize I had something here I could not fix. Failure was not something I was used to. I simply had no answers, websites were filled with grim information, and our doctor was even worse. I shut down mentally. I lost my ability and motivation to fix anything else and then I lost my job. My sister-in-law found the PPMD web site and called my wife to tell her about it. My wife regestered us for the conference that was coming up and we went. I was still very wounded when we arrived, but the staff made us feel like we were in a safe harbor. They understood and were there to point us to the researchers and doctors who could answer our questions. We shared our stories and they listened to us. Some of them took pictures of our boys we were carrying and took them back to their labs, additional motivation for themselves. Pat Furlong the President of the PPMD lost both her sons to DMD, she lead me and so many others through the dark times and into a state where we not only understood what we were up against, but had a platform to build on. I learned to advocate, fundraise, and teach my story to other fathers who were in that dark place where I once lived. Pat, Kim and the entire staff of the PPMD are the kindest, most caring group of people you will ever meet. This group has worked hard and had many firsts by bringing all the experts together and building a model of what the standards of care are, as well as getting drug trials started. This is a full service organization. Kevin Smith

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

research, standards of care defined, communication of posible trials. Connections with other parents.

If I had to make changes to this organization, I would...

give Pat Furlong a 2 week vacation on a deserted island. I know that as soon as we left her, she would swim off looking for a diet Coke and her Blackberry.

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

they helped me move from a place that was not good for anyone, to being a leader again with a new cause and purpose.

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

outstanding people who never put themselves first. Always going the extra mile to do anything outside the 9 dot puzzle for your family.

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

Buy General Motors! Just kidding you could get that for 5! I'd move fast on upregulation of utrophin, as I think it will help all our boys.

Ways to make it better...

I had found the organization sooner.

In my opinion, the biggest challenges facing this organization are...

President Obama's socialized medicine plans. He will run our most talented researchers and doctors out of the United States.

One thing I'd also say is that...

Pat Furlong is a mentor to me.

Should this review be counted for a specific campaign?

Best Buy

When was your last experience with this nonprofit?


Role:  Volunteer & Advocate, support group, ran a little:), pushed Congressman.