Tag: collagen six intermediate congenital muscular dystrophy

  • Patient Advocates, Patient Leaders

    What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.

    Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.

    Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization and then traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.