#58 Living Deafblind: Carrie Francis’ Resilience After 5th Degree Facial Cleft
Despite being told she wouldn’t survive beyond her first week of life, Carrie has overcome extraordinary medical challenges, including severe blindness and hearing impairment from her rare 5th-degree facial cleft.
#57 APOL1-Mediated FSGS: What Families Need to Know, from Diagnosis to Advocacy
Jaime Albright Henighan shares her family’s journey after two of her sons were diagnosed with a rare genetic kidney disease called APOL1-mediated FSGS (Focal Segmental Glomerulosclerosis).
#53 From Journalist to Advocate: Laura Bonnell’s Mission to Support Cystic Fibrosis Families
Parent Laura Bonnell shares about her two daughters who were diagnosed with cystic fibrosis which lead to her advocacy.
#52 Adaptive Toys for Kids with Disabilities: Inspiration from Daughter with Rett Syndrome
Podcaster, Father and Advocate shares about his daughter and how he created adaptive toys and products for others in the disability community.
#51 Niemann-Pick Type C: Understanding Symptoms, Genetics, and New Treatments
Patient advocate and parent Barbara Lazarus shares about her son’s condition and their doctor, Dr. Caroline Hastings, provides her expertise.
#50 Neuromuscular Neurology Explained: Symptoms, Treatments, and Advances with Dr. Bucelli
A deep dive into neuromuscular disorders with one of the field's leading experts, Dr. Robert Bucelli.
#49 Living with NMOSD: Alex Brito's Journey of Resilience and Advocacy
Discover how Alex Brito turns life with NMOSD into a story of strength, advocacy, and inspiration.
#39 Genetic Testing for Rare Diseases with Amy Patterson
Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasia.