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“If you have ever put a dollar in a boot or written your name on a shamrock at a gas station, you may have supported the MDA and we appreciate everyone who has done that. The MDA is an umbrella organization that supports 43 different disorders that are all progressive, neuromuscular diseases for which there are no cure,” explains Kristen Stephenson, Chief Policy and Community Engagement Officer of the MDA.
Kristin Stephenson joins the Patient Activation Network podcast to talk about current Muscular Dystrophy Association (MDA) initiatives including exciting news about patient participation in a recent MDA survey, the MDA’s role in newborn screening and the process of adding new disorders to the newborn screening panel.
About Kristin Stephenson, MHA, J.D.
Kristin Stephenson joined MDA in 2015 and serves as Sr. VP, Chief Policy & Community Engagement 
Officer. Stephenson oversees MDA’s Care & Clinical Services Division, which includes MDA’s Care Center Network, National Resource Center, Program Development Department and MDA’s nationwide Care & Clinical Services field team. She also leads MDA’s Public Policy & Advocacy Department and oversees MDA’s Summer Camp and Recreation initiatives.
Stephenson has dedicated her career to health issues and holds a Bachelors of Science in Nursing from Catholic University of America in Washington D.C. and a Masters of Science in Health Care Administration from Trinity University. After graduate school Stephenson served as a Sr. Health Care Consultant with Arthur Anderson, an international consulting and accounting firm, where she was deployed nationwide to multisystem health care organizations to assist with staffing, utilization, and supply chain cost reduction issues with a focus on contract negotiations. After consulting, Stephenson earned her law degree and served as an Associate in the health care litigation practice groups of the international law firms of Fulbright & Jaworski, LLP (now Norton Rose Fulbright) and Akin, Gump, Strauss, Hauer and Feld, LLP. Prior to joining MDA, the focus of her law practice was on complex corporate litigation pertaining to healthcare matters and intellectual property disputes involving pharmaceuticals and medical devices.
Episode Details
- About Kristin
- An overview of the Muscular Dystrophy Association (MDA)
- The Four C’s: Cure, Care, Champion and Community
- Current MDA initiatives
- Why did MDA conduct a patient survey this year and what were you hoping to learn?
- Newborn screening
- The MDA’s role in newborn screening
- Recently, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) voted to add spinal muscular atrophy (SMA) to the national list of disorders recommended for screening at birth. What does this vote mean?
- Are there ways the patient community can get involved or help support newborn screening for neuromuscular disease?
- How people can get involved in MDA efforts
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