#27 Prevention of Blindness Society
Caren Forsten and Sean Curry share low vision and blindness resources.
#26 Wolfram Syndrome Expertise from Dr. Fumihiko Urano
Dr. Fumihiko Urano shares his world renowned expertise from leading the clinical, translational, and interventional studies of Wolfram syndrome and related disorders.
#25 Pancreatic Cancer with Patient Advocate Leslie Waldman
Leslie Waldman shares her personal diagnosis of pancreatic cancer, which she has lived with for 10 years.
#24 Neuro-Ophthalmic Disorders with Dr. Andrew Carey
Insight from an Assistant Professor of Ophthalmology in the division of Neuro-Ophthalmology at the Wilmer Eye Institute.
#23 Autoimmune Conditions with Dr. Colby Kash
Author of “The Autoimmune Plague” shares about his own autoimmune conditions.
#22 Papillary Thyroid Cancer with Carly Flumer
Carly Flumer shares her experience of a diagnosis of stage I papillary thyroid cancer at the age of 27 and again at 31.
#21 Wolfram Syndrome with Parent Pat Gibilisco
Pat Gibilisco is Patient Advocacy Liaison for the Snow Foundation for Wolfram Syndrome research. In 2021, her daughter Lauren died from Wolfram Syndrome in her mid-30s.
#20 Familial Dysautonomia Foundation
We learn about the genetic conditions Familial Dysautonomia with three lovely guests: Lanie Etkind, Rita Taryan, and Keshi Taryan-Kigel.
#19 Pierre Robin Syndrome with Corinne Merlino
Patient advocate and genetic counseling student Corinne Merlino shares about her rare congenital birth defect that affects craniofacial development.
#18 Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum
Social worker Tamara Blum shares her personal experience being a single mom of 6 children, 5 surviving children include a son with Hattersley-Urano subtype of Wolfram Syndrome.
#17 Mental Health Help with Social Worker Tamara Blum
Social worker and grieving parent Tamara Blum shares her professional insight on when to seek a mental health provider.
#16 ALS with Brooke Eby
Brooke Eby aka @LimpBroozkit opens up about her ALS diagnosis and educating the public about ALS including her Today Show appearance.
#15 Bullous Pemphigoid with argenx
Patient advocate Dr. Naomi Bishop and argenx’s Associate Director of Global Patient Advocacy Shelley Gerson share their insight about a skin condition called Bullous Pemphigoid.
#14 Multifocal Motor Neuropathy with argenx
We have two incredible guests this episode who share their expertise about an autoimmune condition multifocal motor neuropathy: patient advocate Jennifer Burgand and argenx’s Chief Scientific Officer Dr. Peter Ulrichts.
#13 Medical Challenges Toolkit with Kimberly Callinan
In this podcast episode, we provide a toolkit for medical challenges throughout life. We focus on helping listeners become empowered consumers. Consumers who, when faced with a serious diagnosis or medical challenge, learn to ask the right questions and consider treatment options.
#12 Bardet Biedl Syndrome with The Alms (Part 2)
In this podcast episode, Parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder. People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations.
#11 Bardet Biedl Syndrome with The Alms (Part 1)
In this podcast episode, Parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder. People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations.
#10 Low Vision with Dr. Judith Goldstein
In this 30 minute podcast episode, Dr. Judith Goldstein shares her insight on low vision as an Associate Professor of Ophthalmology and the Chief of the Low Vision and Rehabilitation Department at Wilmer Johns Hopkins.
#9 Wolfram Syndrome with Stephanie Gebel Snow
Stephanie Gebel Snow shares her perspective as a patient advocate creating the Snow Foundation for Wolfram Syndrome research.
#8 Oculoplastic Surgery with Dr. Shannath Merbs
Oculoplastic surgeon Dr. Shannath Merbs shares her expertise in cosmetic and reconstructive surgery of the eyelids, orbit, and face in this 30 minute podcast episode.