Connection Is Key: How One GBS Survivor Is Making a Difference Online

    10/19/2020
When Dalton Floyd was 12 years old, he created a Facebook page. While this page could’ve been dedicated to his favorite professional wrestler or everything esports, he picked something a bit heavier, and a bit closer to his heart: Guillain-Barré syndrome (GBS). 

New Jersey Mother Fights for More SMA Testing of Newborns

    10/19/2020
Regina Philipps is a fighter. She fights for her son, Shane, a 2-year-old boy who is living with spinal muscular atrophy (SMA), and every other child who didn’t receive an SMA newborn screening. Shane wasn’t diagnosed until he was 10 months old, after Regina and her husband Chris noticed some strange symptoms about 6 months earlier.

Growing Up With FSHD: A Young Woman's Effort to Raise Awareness About the Rare Neuromuscular Disease

    10/19/2020
When Lexi Pappas was 11 years old, she started showing symptoms of facioscapulohumeral muscular dystrophy (FSHD). Her scapula, more commonly known as the shoulder bone, began protruding, resulting in pain and embarrassment for the middle schooler. However, these symptoms didn’t come as a surprise to Lexi or her parents. FSHD runs in their family.
 

Dr. Alexander Chamessian Receives ANF Development Grant

    9/8/2020
Alexander Chamessian, MD, PhD, has been selected as a recipient of an American Neuromuscular Foundation Development Grant. Dr. Chamessian’s project is called “Determining the Pathogenicity of Autoantibodies in Idiopathic Small Fiber Neuropathy.” Small fiber neuropathy (SFN) is a group of disorders that involves preferential damage to and dysfunction of small diameter sensory and autonomic nerve fibers.