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.