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March 7, 2009

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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

February 26, 2009

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February 26, 2009

Parent Project change our lives. When our son was first diagnosed with Duchenne Muscular Dystrophy six years ago, we were told by top physicians to go home and love our son becasue there was nothing they could do. PPMD told us that wasn't true. Now, years later, our son is in a clincial trial and on a working compound due to PPMD and our involvement with them. They have educated us, inspired us, given us a family/support system and continue to lead us to the cure. When you have a child diagnosed with DMD and you are in the dark, coming across PPMD is like having someone turn on the light.

The Great!

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

my child's standards of care, my access to top professionals, my support system in other parents, the research and education and taught how to advocate.

Ways to make it better...

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

I would change the conference a little. I'm relieved I don't run this company.

More feedback...

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

How safe I feel belonging. I know whatever is going on out there regarding DMD, I am in the know.

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

Amazing and caring beyond what I could write.

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

Cure the disorder forever and hopefully go out of business.

Ways to make it better...

We didn't have DMD

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

Always needing more funding.

Should this review be counted for a specific campaign?

AZ Dept of Education

When was your last experience with this nonprofit?

2009

February 26, 2009

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February 26, 2009

Parent Project Muscular Dystrophy is the best non-profit organization I have worked with. The staff is very friendly, helpful, and accommodating. We had a unique situation where we had a group of people who wanted to fundraise for Duchenne Muscular Dystrophy through the “Run for Our Sons” program, but did not want to travel to the already established events. When approached about doing something “outside the box” and local for us, the answer was not only “yes”, but what can we do to help. I was equally impressed with PPMD’s attention to little details. All the thank you letters sent out to our donors were specific when they could be, for example if the donation was for hula hoops, kid’s dash, raffle, etc the thank you said just that. The letters where also very intentional with a sincere tone that made you feel like this was not just another generic thank you letter. Their awareness campaigns are creative and fun to participate in and their use of up-to-date technology through blogs, fundraising sites, and the virtual community has been a tremendous resource for families, while allowing donors to access what they want/need with ease as well. This organization is big enough to make HUGE impacts in the DMD community, but still small enough to care about everyone who comes in contact with them.

The Great!

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

through my friend's faces, knowing that they are not alone in dealing with their fight with DMD.

Ways to make it better...

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

continue to run things as they are today!

More feedback...

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

working with such caring individuals.

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

extremely accommodating and helpful.

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

find a cure to this awful disease

Ways to make it better...

my experience was great.

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

the competition from other non-profits, so continuing to get the word out about DMD and why people should care about this specific cause.

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

I had a great experience working with PPMD and I am looking forward to working with them again in the future.

When was your last experience with this nonprofit?

2009

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