Iowa Wellstone MDSRC Advisory Committees
The Iowa Wellstone MDSRC has established two advisory groups to evaluate and provide direction for the Center’s work. Members of the Center Advisory Committee were first convened in 2021, while the Patient and Family Advisory Committee was created in 2014.
Center Advisory Committee
The Center Advisory Committee, which meets annually, is comprised of members with expertise in the field of neuromuscular research. The committee includes leaders in basic, translational and clinical research, as well as a family and patient representative. At the annual meeting of the committee, members evaluate the MDSRC’s programs and research progress and participate in any other activities requiring external expertise.
Current Members (2023)
University of Florida, Gainesville, FL
- Professor and Associate Chair, Department of Pediatrics
- Director, Powell Gene Therapy Center
Expertise: Clinical research to develop therapies for inherited muscle disease.
Nationwide Children's Hospital, Columbus, OH
- Chief, Division of Neurology
- Professor, Department of Pediatrics, The Ohio State University College of Medicine
- Member, Center for Gene Therapy, Abigail Wexner Research Institute
Expertise: Pediatric neuromuscular disease and neuroimmunology.
University of Minnesota, Minneapolis, MN
- Professor, Department of Biochemistry, Molecular Biology, and Biophysics
- Director, Paul and Sheila Wellstone Muscular Dystrophy Center
Expertise: Structure and cellular function of the dystrophin-glycoprotein complex.
- Professor of Neurology
- Director, Division of Neuromuscular Medicine, Neurology
- Professor of Pediatrics
- Professor of Molecular Physiology and Biophysics
Expertise: Translational research to develop rational therapies for patients with inherited peripheral neuropathies and related neurodegenerative diseases.
Trisha Tully
Patient and Family Representative
Patient and Family Advisory Committee
The Patient and Family Advisory Committee is configured to incorporate a diverse range of experiences including people with a dystroglycanopathy in addition to parents and caregivers of people with a dystroglycanopathy. A variety of dystroglycanopathy genes and genotypes are represented by committee members. This group provides input on clinical management questions of significance to the community, assists in planning the annual conference, helps to identify clinically significant outcome measures, and offers guidance on ways to improve the clinical research study or study experience. The committee meets at least three times per year and members typically rotate every two to three years.
Current Members (2021)
Kelly Brazzo
Kristen Olsen
Miguel Ramirez
Angie Yates
Kayla Hinnenkamp
