Who We Are

History

Early in 2007, a group of thought leaders in the Duchenne muscular dystrophy community began discussing the need for a new kind of resource that would connect and serve the needs of the entire community. What they envisioned was a central hub that would bring together those living with the disease, along with their families, friends and caregivers, to connect them with medical research, clinical care, clinical trials and each other. At the same time, it would also be a resource for researchers and industries with an interest in Duchenne, allowing access to aggregated, de-identified information provided by patients and their families—information that could prove vital to advances in care and treatment. This resource, a breakthrough multidirectional information portal for Duchenne and Becker muscular dystrophy, would help connect these stakeholders, while providing them with resources never before available in one place. Today, the result of this endeavor is DuchenneConnect, a robust and cutting-edge website and registry.

Who We Are

As its name implies, DuchenneConnect represents the coming together of a wide range of entities and individuals who recognize the value in pooling their combined expertise and information. The organizers of DuchenneConnect come from leaders in the non-profit sector, government agencies and academic institutions.
Regardless of their individual backgrounds, the thought leaders of DuchenneConnect share a common goal to increase the community’s ability to help one another through improved communication, and by doing so, to help the millions of people affected by Duchenne and Becker muscular dystrophy.
The information provided on DuchenneConnect has been developed with the review, direction and advice from a group of experts in Duchenne and Becker muscular dystrophy. Advisors contribute to DuchenneConnect in many areas including reviewing educational materials, providing programmatic direction, advising on processes and procedures, and facilitating opportunities for outreach and collaboration.
The operations team behind this incredible resource continues to refine and perfect the site so that it evolves to best serve the needs of the entire community. We are open to your suggestions and feedback.

DuchenneConnect Organizers and Partners

  • Parent Project Muscular Dystrophy (PPMD)
  • Centers for Disease Control and Prevention (CDC)
  • AltaVoice/Invitae
  • Emory University, Department of Human Genetics
  • NIH, Office of Rare Diseases: Collaboration, Education & Test Translation (CETT) Program
  • National Center for Biotechnology Information (NCBI)

DuchenneConnect Operations Team

  • Kyle Brown, CEO, AltaVoice/Invitae, CA
  • Pat Furlong, Founding President & CEO, PPMD, OH
  • Kimberly Galberaith, Chief Operating Officer, PPMD, NJ
  • Ann S. Martin, MS, CGC, Co-Director of DuchenneConnect, PPMD, NC
  • Ann Lucas, MS, CGC, Co-Director of DuchenneConnect and PCORnet Co-PI, PPMD, NC
  • Jennifer Ely, MS, CGC, Decode Duchenne Program Manager, PPMD, PA
  • Matthew Walsh, DuchenneConnect Assistant Curator, PPMD, NY
  • Holly Peay, PhD, CGC, PCORnet Co-PI, RTI International, NC

DuchenneConnect Clinical Advisors

  • Doug Biggar, MD, Developmental Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada
  • Kate Bushby, MD, Professor of Neuromuscular Genetics, University of Newcastle upon Tyne, UK and TREAT-NMD Co-Ordinator
  • Linda Cripe, MD, Pediatric Cardiologist, Nationwide Children's Hospital, OH
  • Joline Dalton, MS, CGC, Paul and Sheila Wellstone Muscular Dystrophy Center, University Of Minnesota, MN
  • Tina Duong, PT, PhD, Clinical Research Manager, Stanford University School of Medicine, CA
  • Jonathan Finder, MD, Clinical Director, Division of Pediatric Pulmonology, Children's Hospital of Pittsburgh of UPMC, PA
  • Richard S. Finkel, MD, Division Chief, Neurology, Nemours Children's Hospital, FL
  • Kathi Kinnett, RN, CNP, Director of Clinical Care, PPMD, OH
  • Katherine Mathews, MD, Child Neurology, University of Iowa, IA
  • Laura McAdam, MD, Developmental Pediatrics, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada
  • Lauren Morgenroth, MS, CGC, Operations Manager, TRINDS
  • Stanley F. Nelson, MD, Professor of Human Genetics, David Geffen School of Medicine, UCLA, CA
  • Shree Pandya, PT, DPT, MS, Co-PI of NY MDSTARnet, University of Rochester School of Medicine and Dentistry, NY
  • James Poysky, PhD, Child Psychology, Baylor College of Medicine, Houston, TX
  • Hemant Sawnani, MD, Assistant Professor, Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, OH
  • Thomas Sejersen, MD, Professor of Neuropediatrics, Karolinska Institutet, Stockholm, Sweden
  • Kathryn Wagner, MD, PhD, Center for Genetic Muscle Disorders, The Kennedy Krieger Institute, MD
  • Brenda L. Wong, MD, Associate Professor, Pediatric Neurology, Cincinnati Children's Hospital Medical Center, OH
DuchenneConnect Industry Advisors
  • David Cox, PhD, Clinical Research Advisor, Eli Lilly and Company
  • Joanne Donovan, MD, PhD, Chief Medical Officer, Catabasis® Pharmaceuticals
  • Diana Escolar, MD, Chief Medical Officer, Akashi Rx
  • Mary Frances Harmon, Senior Director, Patient and Professional Advocacy, PTC Therapeutics
  • Madhuri Hegde, PhD, FACMG, Senior Director, PerkinElmer
  • Edward Kaye, MD, Chief Medical Officer and Senior Vice President, Sarepta Therapeutics   
  • Carl Morris, PhD, VP R&D, Solid Biosciences 
  • Pankaj Patel, Associate Director, Advocacy, Bristol-Myers Squibb
  • Jon Tinsley, PhD, Chief Scientific Officer for DMD, Summit plc
  • Jodi Wolff, PhD, Patient Advocacy Manager, Santhera Pharmaceuticals

DuchenneConnect Family & Individual Advocate Advisors

  • Stacia Anderson, parent, Chicago City, MN
  • Brian Denger, parent, Biddeford, ME
  • Anessa Fehsenfeld, parent, Rockford, MI
  • Lisa Groeger, parent, Tucson, AZ
  • Stefanie Killian, parent, Rockwall, TX
  • Bob McDonald MD, parent, Jefferson City, MO
  • Thomas Neupauer, parent, Mill Valley, CA
  • Conrad Reynoldson, Duchenne MD, Seattle, WA
  • Ivy Rebecca Scherbarth, parent, Fort Collins, CO
  • Elizabeth Vroom, parent and President of Duchenne Parent Project of the Netherlands