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MDF Advocates Participate in PRMRP Review

Peer-reviewed Medical Research Program (PRMRP) consumer advocate Suzette Ison recently participated in the evaluation of research applications submitted to the PRMRP sponsored by the Department of Defense (DOD). Suzette was nominated for participation in the program by the Myotonic Dystrophy Foundation. As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to help determine how the $330 Million appropriated by Congress for Fiscal Year 2018 will be spent on PRMRP research.

Speaking as a Consumer Reviewer

Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Suzette Ison said that, “As a caregiver, managing DM1 can be so isolating. No one seems to truly understand or truly get it. It’s an entirely different world. Volunteering and advocating are my coping skills. I have to be helping in some way to find a cure or at least a treatment for DM1. Participating in the Department of Defense Peer Reviewed Medical Research Program has helped me tremendously to understand the steps and process involved that our DM1 Community must go through on our way to a cure.”

"I have found that connecting with and learning from other DM1 families who understand the challenges we all face, has been my main source of strength and hope. Through all my advocacy efforts, I want more people to understand that people living with DM1 are not lazy – their symptoms make them very tired and very weak. They are very caring, kind, smart and compassionate people. Their disease just happens to make them very vulnerable and I believe there is a desperate need out there for compassion, kindness and support in the DM1 community."

"Connecting with and learning from other DM1 families who understand the challenges we all face, has been my main source of strength and hope."

"I normally am a very passive and quiet person, but helping my son try to live his life with DM1 has forced me to become a public advocate to ensure that he and others affected by this complicated and complex disease have the services and support they need to face the future. BillyDean cannot advocate for himself or fully understand the disease. For the rest of my life I will advocate for him and for other families. I will not stop until this disease eliminated."

A History of Advocacy

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since FY96. Colonel Stephen J. Dalal, Director of the Congressionally-directed Medical Research Programs expressed his appreciation for the consumer advocates perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.”

Scientists applying propose to conduct innovative research focused on the development and implementation of medical devices, drugs, and clinical guidance that will enhance the precision and efficacy of prevention, diagnosis, and treatment across a wide range of disciplines. The PRMRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.

More information about the DOD’s PRMRP is available here!

 

 

 

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