Cathy G 4/21/25 Cathy G 4/21/25

#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.

Cathy G 4/7/25 Cathy G 4/7/25

#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).

Cathy G 2/3/25 Cathy G 2/3/25

#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.

Cathy G 1/20/25 Cathy G 1/20/25

#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.

Cathy G 1/6/25 Cathy G 1/6/25

#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.

Cathy G 2/19/24 Cathy G 2/19/24

#30 Rare Disease Advocacy with Wes Michael

Celebrate Rare Disease month in this episode with the President and Founder of Rare Patient Voice.