Resources for Patients and Families

a screenshot from the linked video that shows 2 people walking and one riding an electric scooter wearing "2023 Wellstone Conference" shirts

Connecting for a Cure (documentary)

Produced by Living in the Light, this short documentary showcases some of the experiences and journeys of people with Limb Girdle Muscular Dystrophy Type 2I/R9 who have experienced the annual Wellstone Dystroglycanopathy Patient and Family Conference in Iowa City.

My Experience Participating in a Research Study

Lacey Woods is a wife, mother of 6 children, and an ambassador for LGMD2i (R9). She works with her husband in real estate and is a trauma coach in Washington. Learn about her experience traveling to Iowa City to participate in Dr. Kathy Mathews's clinical research study

two men and two women pose and smile for photo at concert

Connecting Over Diagnosis Leads to Lifelong Friendships

Read Melissa Grove's story on her friendships and connections spurred through attending the Wellstone Center Dystroglycanopathy Patient and Family Conference in Iowa