Learning From Others

I have been on the road for the last couple of weeks.  My first stop was Washington, DC, where I attended the One Voice Advocacy Conference hosted by Parent Project Muscular Dystrophy (PPMD).  PPMD was founded 15 years ago by Pat Furlong, whose 2 sons had been diagnosed with Duchenne Muscular Dystrophy.  While she eventually lost her sons to the disease, Pat continued to build PPMD into the powerful advocacy organization that it is today.

PPMD serves as an admirable model for the spinal cord injury community to follow.  Duchenne is a rare disease that strikes boys almost exclusively, with diagnosis at age 3-5 and average survival of 10-15 years.  It is an exhausting and heartbreaking experience for families to endure, yet in the midst of this journey parents are finding the time and energy to advocate for their sons.

The conference opened with testimony from Duchenne family members.  Representatives from the NIH, FDA, and CDC were in the room to listen, offering an extraordinary opportunity for the advocate community to share a perspective “from the trenches”.  The families did an amazing job of communicating their concerns, their daily life experiences, and their sense of urgency to find therapies that will prolong and improve the lives of Duchenne patients.

Parents spoke with a passion borne from experience; at the same time they demonstrated an impressive level of knowledge about the disease, the progress of research, and the clinical trial process.  Clearly they had spent a lot of time educating themselves, and as a result spoke from a position of strength to the policy makers in the room.  They asked and answered questions with equal aplomb, and I came away with a couple of lasting impressions to inform the work of U2FP:

  1. Advocacy by community members can make a HUGE difference in the progress of research, but it must be targeted and well-informed to be effective.
  2. We must add the community voice when decisions are being made about where to allocate research funds, be they public or private.

For more information on PPMD’s programs and how they are making a difference, please visit their website.  I’ll write more about my travels in the next blog post.

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