Clint Porter – DMDRP Consumer Reviewer

I am a self-proclaimed science geek. I excelled in science throughout school and completed my bachelor’s degree in zoology. I followed my undergraduate degree with a master’s in environmental science. I own an ecological and environmental consulting firm and spend several days a week studying and describing ecological systems in nature.

Sometimes, people are reminded of the ephemeral nature of life and that we are not in complete control. Our son, Grant Wade Porter, received his clinical diagnosis of Duchenne Muscular Dystrophy (DMD) on March 22, 2017, when the results of his genetic testing indicated he has a single thiamine base delineation within exon 38. Grant’s diagnosis crushed my wife and me. We had to pick ourselves up from the doctor’s floor and try to stop crying enough to drive home. Our busy lives immediately changed direction, and we were forced to face the ephemeral nature of life.

We also found we were not alone in the diagnosis of DMD. There is an active and wonderful community of families and clinicians focused on this terrible, rare disease. We enjoy attending workshops and meetings supported by organizations working to help families challenged by DMD. We have worked often with several staff at CureDuchenne ® and plan on supporting our community as much as possible. We are a CureDuchenne ® Champions family and support the focus and goals of CureDuchenne ®. I could not decline when I was asked by my CureDuchenne ® family to contribute to the Congressionally Directed Medical Research Programs (CDMRP) Duchenne Muscular Dystrophy Research Program (DMDRP). I very much wanted to contribute. My background in science helped me understand why Grant’s muscles did not work the same as our daughter’s. I was fortunate to act as a consumer advocate for two years and would continue to assist in any way possible. You can be empowered by helping yourself and others, and we have learned the very personal value of knowing you are doing all you can.

We have seen several research clinicians speak across the country and are very excited by the potential of current and near future treatments for DMD. My wife and I have been very surprised and encouraged by the ease of contact and the responses we have received from world-class clinicians, scientists, advocates, and organizations regarding their work on DMD. The pharmaceutical companies focused on DMD are supported by scientists and staff who care. I have seen them attend meetings and workshops, only to stay and visit with families beyond what is required of their personal position with the company.

We are excited by the DMDRP and hope DMD receives more research funding, so necessary to provide hope and a brighter future for our community. My role as a peer review consumer allowed me the opportunity to provide a voice for the DMD community. Managing the public funding of research and development is an important obligation for the CDMRP and reaching out for consumer review and comment is valued stewardship. I also strongly believe the scientific reviewers valued my comments and the process allowed for important discussion based on consumer comments.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision.