2023 Dystroglycanopathies Patient & Family Conference

Friday and Saturday, June 23-24

Conference Materials

• 2023 Wellstone Conference Agenda
• 2023 Life Hacks (PDF)

2022 Dystroglycanopathies Patient & Family Conference

Friday and Saturday, August 5-6

Conference Materials

• 2022 Conference Agenda

Conference Talks

• Dr. Katherine Mathews and Carrie Stephan - Welcome, Updates and Introduction to Outcome Measures
• Anna Reelfs - Pain and Fatigue in LGMDR9
• Dr. Kevin Campbell - Restoring Muscle Function in Older Dystroglycanopathy Mice with Gene Transfer
• Drs. Anh Nguyen, Joanne Donovan and Douglas Sproule - Industry Presentations
• Dr. Theodosia Thoma - Respiratory Monitoring and Management in Patients with Dystroglycanopathy
• Carol Abraham, Kelly Brazzo and Kathryn Bryant Knudson - Advocacy Updates

2020 Virtual Dystroglycanopathies Patient & Family Conference

Friday and Saturday, July 11–July 12

Conference Materials

• 2020 Virtual Conference Agenda
• 2020 Home Hacks (PowerPoint)

Conference Talks

Day One

• Dr. Kathy Mathews and Dr. Glen Nuckolls - Introduction
• Dr. Kathy Mathews and Eric Libell - Pregnancy in LGMDR9
• Shelley Mockler - Let's Move!
• Dr. Kathy Mathews - Introduction to Clinical Trials
• Dr. Isabelle Richard - Genethon: Therapy for FKRP Deficiencies
• Dr. Nicholas Johnson - BridgeBio: Ribitol Therapy for LGMD2i
• Dr. Scot Wolfe - UMass Genome Editing
• Dr. Martin Childers - AskBio LGMD2i Update

2018 Dystroglycanopathies Patient and Family Conference

Friday and Saturday, July 13-14

Conference Materials

• 2018 Conference Information
• View an introduction to the dystroglycanopathies

Conference Talks

• Dr. Kathy Mathews - "Introduction to Dystroglycanopathies"
• Dr. Jeff Chamberlain - "A Roadmap for Bringing FKRP Gene Therapies into Clinical Use"
• Dr. Julie Christensen - "Tips and Tools to Engage in Public Policy Advocacy"

2016 Dystroglycanopathies Patient and Family Conference

Friday and Saturday, August 5-6

Conference Materials

• 2016 Conference Information 
• Life Hacks 2016

Conference Talks

• Melissa Grove - Living Your Best Life with MD Working.pdf
• Dr. Kevin Campbell - Former Postdocs
• Dr. Glen Nuckolls - The Current Landscape of Muscular Dystrophy Research, an NIH Perspective

2013 Dystroglycanopathies Conference

Friday and Saturday, July 19-20

Conference Materials

• 2013 Schedule of Events 

Conference Talks

• Carrie Stephan - Study Participant Data 
• Group Discussion - Strategies for Caregiver Fatigue 

2012 Dystroglycanopathies Conference

Friday and Saturday, August 17-18

Conference Materials

• 2012 Schedule of Events  

Conference Talks

• Carrie Stephan - Study Participant Data 
• Dr. Kathy Mathews - Dystroglycanopathies: Introduction and Updates 
• Dr. Steven Moore - Iowa Wellstone Center Muscle Tissue and Cell Culture Repository 
• Christina Trout - Inheritance of Dystroglycanopathies 
• Dr. Daniel Beltran - Deciphering the genetic basis of Dystroglycanopathies: the beginning of the story 
• Dr. Tim Starner - How important are the lungs in neuromuscular disease? 
• Dr. R.Eric Edens - Cardiac Issues in Neuromuscular Disorders: Monitoring, Prevention and Treatment 
• Dr. Tobias Willer - Patient skin fibroblasts: A versatile tool for identification of  novel muscular dystrophy disease gene