Government, Industry, Non-Profit, Academic Partners

Partnerships are the heart of our Wellstone MD CRC. Collaborators and expert consultants support the cores and projects are experts in their respective scientific, clinical and service areas.

Patient Advocacy Partners 

Daniel P. Perez, A.B., President, FSH Society, Inc., UMMS, Worcester, Massachusetts. As an FSHD patient advocate, Mr. Perez has a leadership role in the Center and in Core A specifically to implement communications strategies, help to manage the Center Website, organize the Patient-Researcher Meeting and International Workshops, and work with patients and families to provide education and support for their participation in the Core C biopsy program. The FSH Society and the Center cost share to organize these meetings. 

Bill Moss, Founder and Chairman of the Australia-based FSHD Global Research Foundation, is a member of the Wellstone Center Advisory Committee.

Center Collaborators

Dr. Jennifer Chen, Ph.D., Research Associate, Wellstone Muscular Dystrophy Program and Department of Cell and Developmental Biology at UMMS. Dr. Chen is an expert in muscle stem cell biology. She oversees the development of the FSHD cell and DNA repository in Core C and collaborates in the biomarker discovery and therapeutic development research programs of Projects 2 and 3. 

Dr. Takako Jones, Ph.D., Senior Research Scientist, Wellstone Muscular Dystrophy Program and Department of Cell and Developmental Biology at UMMS. Dr. T. Jones is an expert in molecular genetics and collaborates in studies to identify FSHD epigenetic modifiers in Project 2. 

Dr. Jeanne Lawrence, Ph.D., Professor and Chair, Department of Cell and Developmental Biology at UMMS. Dr. Lawrence is a leading expert in high resolution cell imaging to investigate the functional organization of genes and RNAs within the nucleus and epigenetic mechanisms of gene control. She collaborates on studies of FSHD epigenetic modifiers in Project 2. 

Dr. Bruce Wentworth, Ph.D., Senior Scientist, Genzyme/Sanofi. Dr. Wentworth is an industry partner with extensive experience and expertise in the development of therapeutics of treat of muscular dystrophies through research at Genzyme and with academic researchers. He collaborates in the therapeutic development studies in Project 3.

Center Consultants and Services

Dr. Steven Moore, M.D., Ph.D., Professor of Pathology, University of Iowa School of Medicine and the Iowa Wellstone. Dr. Moore and the Iowa Diagnostics Lab is responsible for FSHD genotyping blood and muscle samples for patients participating in Center research. 

Dr. Stanley Nelson, M.D., Ph.D., Professor of Human Genetics and Pathology, UCLA. Dr. Nelson has expertise in genome and exome sequencing and muscular dystrophies and will oversee the exome sequencing studies of non-manifesting carriers in Project 1.