PPMD was founded 15 years ago. Feels like a long time in so many ways. We were young then. There were few disease specific organizations and no Duchenne specific organization. The very idea of starting an organization that would take on the challenge of treatment and a cure for Duchenne was pretty overwhelming. We were not thinking about issues of identity or branding. We were a small group of parents and our first thought was our sons. It made sense to be the “Duchenne Muscular Dystrophy Research Foundation - DMDRF”. It made sense until one of the umbrella organizations sent us a legal letter suggesting the name would confuse donors and advised us to stop at once.

Stopping was not in the equation and we simply said ‘we are parents’ and adopted the name Parent Project. That is, until we realized that this name actually belonged to a group of families focused on substance abuse. Duchenne Parent Project made sense as well and we trademarked DPP. This was our experience in the first years of our existence. The reality is that we paid little attention to our name and much more attention to what we needed to accomplish. We were and are focused on research but we also recognized that fundraising would not provide enough money to achieve our goals. We developed a long list of needs:

* Research centers
* Core facilities (large and small animal models, tissue repository, vector production)
* Industry interest
* Improved diagnostics
* Data collection
* Comprehensive inter-disciplinary care
* Clinical trials
* Programs targeted to seed novel ideas
* Programs to recruit young physicians and reseachers
* Education and Awareness
* More time with our sons.

We agreed that a comprehensive approach was required and this comprehensive approach would mean an aggressive advocacy effort. We needed government support to achieve our mission. As we matured, we realized that this could not be a single-minded effort – treating and curing our sons is not as simple as ‘betting on the right research horse’. Rather we agreed that we needed to protect our sons today with comprehensive care by experts and seed the field of ideas targeting validated pathways, provide incentives for novel ideas, attract industry, and secure significant government support.

We thought about ‘cure’ but we recognized that we needed TODAY to be important as well because if we lost today, there was no reason for tomorrow. We thought about ‘treat’… but we needed more than treatments. So we thought about what parents’ really want –the very best for their children every day of their life. And we had evolved to include a world of individuals that extended far beyond our small group of families and in that maturing, settled on Parent Project Muscular Dystrophy.

All parents everywhere, working together on one common theme – protect today, insure many tomorrows - treatment and cure for Duchenne muscular dystrophy.

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Comment by Ian Anthony Griffiths on July 29, 2009 at 4:13pm
Thanks Pat

Comment by Pat Furlong on July 29, 2009 at 2:16pm
I understand the model was not your point, just made the case that the model exists and in a variety of forms. Ian, hopefully you will spread the word about the entire community working together. In the meantime, as our board continues to expand, this topic will be included in the discussion for sure. One thing is sure, the world of Duchenne is rapidly changing and we will adapt and grow as well.
Thanks very much Ian. I value your insight and opinion.
Comment by Ian Anthony Griffiths on July 28, 2009 at 6:44pm
The model wasn't my point, just the name. Burger king and Mcdonalds have a similar model, but different names and meanings. Could still be PPMD, as in maybe People project MD. I understand everyones welcome here, which is brilliant. As you know words mean a lot. I want PPMD to grow, evolve etc. "Parent" just conjures up images in my head of other people thinking that means only children are living with the disease, that their too "immature" and "naive" to help fight their own disease. More of us guys living with it are now in their twenties, we're part of this too and want to help. Also the cynic in me kind of feels like those with dmd who are over twenty (like me) aren't gunna get the full benefits of treatments, and everything is aimed at those below 18. I don't want to beleive that is happening and don't beleive it is but thats what one word conjures up for me.

I understand things cost money to change, and we want the money for research etc.. but there could be deals made with outside compaines to reduce the costs.

Thanks for explaining

Kind regards


Comment by Pat Furlong on July 28, 2009 at 12:57pm
Hello Ian,

To be honest, we have considered changing the name at different points in time. When we think about this, we realize everything that would need to happen - website, materials, letterhead, etc - and this would mean investing significant dollars into the effort. In addition, we are a known entity - in the community, US Congress, and government agencies, industry, neuromuscular research community, clinical community and on websites, etc.
I understand your suggestion/concern. We are interested in having everyone in the community participate - families, individuals with dmd/bmd, friends, researchers, physicians, industry, House and Senate members, everyone. I am thrilled you are helping Action Duchenne and even though they changed their name, the model is still the ppmd model. Ian, PPMD will continue to grow and evolve. I cannot say the PPMD will never change the name, but I can say, that it is not currently on the radar screen. John Killian (Chair) and others on the Board are focused on preserving today and insuring tomorrow for all boys (and some girls) with Duchenne or Becker MD. You aready know we have additional vehicles- DuchenneConnect, RunforourSons, CoachtoCureMD... and more!

.I think it is essential that we work together, learn from each other and accelerate treatments and cures. Everyone is welcome here.

Warm regards,
Comment by Ian Anthony Griffiths on July 27, 2009 at 10:48am
Very interesting Pat. I just have one extra thought, i'm sure there are many young men with DMD who would like to help our cause, and the word "parent" can be a little off putting. Over here in the UK our parent project renamed to Action Duchenne, which feels far more like an organisation for everybody affected by DMD, including parents, us the boys/men with DMD, grandparents, sponsors etc. With the more popular internet becoming easily reachable by the affected guys, who could help the cause. do you think another name change will be coming?

I try to help the cause here in the UK with my creativity producing art for Action Duchenne, I've produced postcards, christmas cards, and awareness posters. Also I'm writing an autobiography which will possibly raise awareness, I also have written a few poems. Lately I've made some music too. I'm sure theres plenty of boys/men in America who could offer their talents.

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