Amsterdam: November 9, 2008 –
United Parent Projects Muscular Dystrophy –an international collaboration focused on Duchenne muscular dystrophy.
On Sunday, November 9, UPPMD members met in Amsterdam. Members present included representatives from Italy, Germany, Ireland, Switzerland, the Netherlands, Spain, UK and the US. It was exactly the right time.
A little history: Parent Project Muscular Dystrophy (PPMD) was incorporated in April, 1994. Elizabeth Vroom, inspired by the efforts in the US, incorporated Duchenne Parent Project (DPP) in the Netherlands in 1995 On a Sunday afternoon Pat Furlong and Elizabeth would travel to Rome to meet Filippo Buccella. During the meeting Filippo recalled the diagnosis of his son as the ‘dark night’ and making the decision to establish DPP Italy… morning. We became a threesome, Italy, the Netherlands and USA and very soon after added Germany, called Benny & Co and Australia, Parent Project Australia (PPA). In the infancy of our relationship, we developed a single goal – buying time for our sons… accelerating treatments and a cure for Duchenne. This was the first time parents interacted with researchers in an organized way. It was the first time parents would invest in academic research. It was the first time parents would realize that they could open doors for research, attract industry, improve awareness and impact care. Parents recognized that if the landscape of Duchenne was to change, they would have to do it.
We became friends, business partners, collaborators. In those early days we were too young in our own local effort to understand what an international organization would require. We were all still trying to understand our own small organizations in the context of our countries, what was possible, what obstacles existed, what doors were open and what doors would require new keys.
Over the next few years, we would expand our horizons, connecting with parents around the world, sharing knowledge, investing in research, connecting our families to each other. “Sister’ Projects were organized in many countries across the world – Australia, France, UK, Spain, Switzerland, Ireland, New Zealand, S. Africa, Sri Lanka, Nepal, Romania, Czekslovakia, and India. On this Sunday, we realized we were becoming a world collaboration on Duchenne. Taken together, we have invested over 30 million dollars over the last 10 years and we have leveraged a great deal more.
We had all matured. Initially we thought accelerating treatments and cure would be a linear process, investing in academic research and industry. As each country discussed their work on Sunday, it was obvious that none of us believed the process was simply related to research investment. Together we discussed our efforts, our investments, our participation in developing protocols for trials, our work with Regulatory agencies, our advocacy. We discussed the variability in care within a country and across the world. We discuss awareness, diagnosis, genetic testing and data collection. We discussed the importance of working together and investing together because together we have more impact and more ability to negotiate with industry. We will have more strength and more possibilities. We have committed to this effort because it will make a difference for all of our sons. It has already. And we are committed to work together to end Duchenne.