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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases Research

Mission: Parent Project Muscular Dystrophy's mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion.

Programs: Support for research to accelerate treatments and a cure for duchenne muscular dystrophy including studies in the following areas: fda draft policy guidance, combined therapeutics, serca2 gene therapy, aon-induced exon skipping ips cells and therapeutic applications, and failed regeneration in md, to name a few.

educational initiatives including online resources an annual conference held in chicago that brought scientists and families in the duchenne community together to discuss and expedite treatments, patient care, and research for a cure for the disease. Other educational efforts were promoted through a new initiative called transforming duchenne care, f. A. C. E. S. , decode duchenne, and duchnne connect.

advocacy is promoted on an annual basis through a legislative conference held in washington, d. C. Under the leadership of a consulting firm based in the area. Parents take a hands-on role in communicating with legislators during this process, for the purpose of promoting awareness and encouraging government funding for research and patient care.

Community Stories

3 Stories from Volunteers, Donors & Supporters

9 jgrace

Client Served

Rating: 5

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

12

Client Served

Rating: 5

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.

12

Client Served

Rating: 5

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.