#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.
#48 Sudden Cardiac Death with The Dressmaker’s Mirror’s Dr. Susan Liebman
Dr. Susan Liebman’s powerful new book, The Dressmaker's Mirror, reflects on her family’s tragedies and how genetic insights can prevent cardiac sudden death and save lives.
#47 Living with NAION: Rachel Schreiman’s Journey Through Vision Loss and Advocacy
Rachel shares her story of resilience after experiencing two episodes of Non-Arteritic Anterior Ischemic Optic Neuropathy (NAION), a rare and debilitating eye condition caused by insufficient blood flow to the optic nerve.
#46 Decoding Colon Cancer: Expert Insights on Screening and Genetics from Gabrielle Shermanski
Cancer genetic counselor Gabrielle Shermanski shares her expertise in colon cancer including screening, risk levels, genetic testing and more.
#45 Adapting to Blindness Before 30 with Zach Ship
On a vacation in Madrid Zach loses his vision and shares the scary experience and how he has adapted his life in the two years since.
#44 How a Kidney Transplant Saved Zach Ship’s Life at 19
At 19 years old Zach Ship’s life was threatened by kidney disease, his mother saved him by donating her kidney to him.
#43 Shari Ship on Donating Her Kidney to Son
Her son, Zachary, was diagnosed with Membranous Nephropathy as a teen and quickly required a kidney transplant.
#42 Huntington’s Disease with Tanita Allen
Author and advocate Tanita Allen shares about the delay in her accurate diagnosis of Huntington’s Disease and living with the condition.
#41 Dwarfism with Colleen Gioffreda
Charismatic Colleen Gioffreda shares her experience living with dwarfism including her roles at Johns Hopkins, Little People of America, and as a mother.
#40 Overcoming Crohn’s Through Pilates with Ryan Hodgkinson
A highly respected Pilates instructor shares his journey into fitness that was profoundly shaped by his personal experience with Crohn’s disease.
#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.
#38 Dr. Tara Zier on Stiff Person Syndrome
The Founder of the Stiff Person Syndrome Research Foundation shares her personal journey with the rare and debilitating autoimmune disorder.
#37 Congenital Hyperinsulinism with Advocate Julie Raskin
The co-founder of Congenital Hyperinsulinism International (CHI) shares her son’s diagnosis and teaches us about the condition.
#36 Cochlear Implant Surgery and Recovery with Marc Bassin
After he recovers from his cochlear implant surgery, Marc rejoins the show to share how the experience has been.
#35 Sudden Hearing Loss with Marc Bassin
Marc experienced a sudden and unexpected loss of hearing in one ear, dramatically altering his daily life and what led to the choice to schedule his cochlear implant surgery.
#34 Bloom Syndrome with The Yasbins
Parent and Rare Disease Advocates share their son’s diagnosis odyssey with Bloom Syndrome.
#33 Tay-Sachs and Grief with Myra Sack
A mother opens up about the death of her daughter from Tay-Sachs disease and how it lead to writing her memoir, Fifty-Seven Fridays.