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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

6 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

I found out about this charity 2 years ago. I emailed the founder Pat Furlong for some information. She responded very quickly with all my questions answered . I researched how they spent there money and started to contribute. Its been a life changing event for me. I attended there last conference in Florida and left feeling such pride in there work.

10 Kevin

Volunteer

Rating: 5

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

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.

13

Volunteer

Rating: 5

Parent Project Muscular Dystrophy (PPMD) is an organization focused on improving the lives of those affected by Duchenne and Becker Muscular Dystrophy (DMD). They focus on DMD issues related to care, advocacy, research and education. PPMD has an exceptional Annual Conference that brings families and affected individuals together to learn from top researchers, clinicians and others in the community helpful to those living with DMD. Participants have much access to presenters and are able to ask questions after presentations and often one on one after. The PPMD website provides a wealth of information about many topics related to DMD. The organization hosts a community page linked to the main web page where friends and family members are able to meet for information and support. Another area PPMD has led the community is in Legislative Advocacy. PPMD and its family Advocates were successful in 2001 in passing the MD CARE Act which has dramatically improved NIH and CDC focus on the disorder. Advocates saw that the Act was reauthorized in 2008, a year when very little federal legislation passed, and Advocates have made great strides in increasing research for Muscular Dystrophy as a whole and education and outreach programs for DMD specifically. PPMD has reached out to other Volunteer Health Organizations who are interested in DMD both nationally and internationally. PPMD seeks to build these relationships to help the community and avoid duplication of efforts that waste resources. PPMD funds research that has the most promise to improving the lives of affected individuals. With advice from the organization's scientific adviser they have identified and funded potential opportunities that may slow the progression of DMD and/or improve the quality of life for those living with DMD. PPMD has developed a patient/family reported DMD registry. Aggregate information being collected may be useful for the research and clinical communities about DMD and the site will serve as a resource for identifying participants for future clinical trials. PPMD relies on fund raising and donations to support programs and works hard to provide to do this with as little administrative costs as possible.