Cathy G 8/3/26 Cathy G 8/3/26

#89 Living Beyond the Shadows: Life with Erythropoietic Protoporphyria

Craig Leppert shares his life with erythropoietic protoporphyria, the creation of Shadow Jumpers, and his mission to help photosensitive families find community, freedom, and joy.

Cathy G 7/6/26 Cathy G 7/6/26

#87 Redefining Disability with Congenital Muscular Dystrophy

Kelly Berger and Avery Roberts share how living with congenital muscular dystrophy shaped their disability identity, advocacy, and mission to build community through Wheel Talk podcast.

Cathy G 4/6/26 Cathy G 4/6/26

#81 How to Support Someone with Chronic Illness

Patient experience expert Meredith Mangold shares how to build a sustainable support system that honors the invisible journey.

Cathy G 1/19/26 Cathy G 1/19/26

#76 When Pain Never Stops: A Survivor’s Story of Chronic Pain and Hope

One woman’s journey through devastating chronic pain—and the personalized care that helped her reclaim her life.

Cathy G 1/5/26 Cathy G 1/5/26

#75 Genetic Testing for Rare Diseases with Amy Patterson [Re-Release]

Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasia.

Cathy G 12/1/25 Cathy G 12/1/25

#73 Running Toward a Cure: NF2 Advocate Becomes Marathon Runner to Raise Awareness and Funds

At 16 years old, Leanna Scaglione was diagnosed with NF2-Related Schwannomatosis, having to leave her dreams of becoming a ballerina behind, she altered her athletic journey becoming a multi-marathon runner.

Cathy G 11/17/25 Cathy G 11/17/25

#72 Wolfram Syndrome Expertise from Dr. Fumihiko Urano [Re-Release]

Dr. Fumihiko Urano shares his world renowned expertise from leading the clinical, translational, and interventional studies of Wolfram syndrome and related disorders.

Cathy G 11/3/25 Cathy G 11/3/25

#71 When the Diagnosis Comes Late: Navigating Adult Wolfram Syndrome

From misdiagnosis to empowerment, Rachel Hyman and Cathy Gildenhorn share their real stories of being diagnosed with a rare disease, Wolfram Syndrome, in adulthood.

Cathy G 10/20/25 Cathy G 10/20/25

#70 The First Spinraza Patients: A Rare Mama’s Advocacy for her Son with SMA

Nikki McIntosh, a rare disease advocate, shares how her family has navigated her son’s diagnosis of Spinal Muscular Atrophy (SMA).

Cathy G 9/15/25 Cathy G 9/15/25

#68 The Hidden Danger in Newborns: OTC Deficiency Explained by a Geneticist and a Mother

Pruitt was born with ornithine transcarbamylase (OTC) deficiency, hear from his mother Jordan Kruse and geneticist Dr. Susan Berry about the condition and how healthcare can do better.

Cathy G 9/1/25 Cathy G 9/1/25

#67 Exploring Clinical Trials in Latin America with Julio G. Martinez-Clark

Discover how Latin America offers new opportunities for clinical trials and how Julio G. Martinez-Clark is leading the way in advancing medical device innovation in emerging markets.

Cathy G 8/18/25 Cathy G 8/18/25

#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed

Elizabeth Ansell, founder of #NotJustFatigue, joins the show to share about living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the advocacy she does through her non-profit.

Cathy G 8/4/25 Cathy G 8/4/25

#65 Invisible Swells: Surviving with Hereditary Angioedema Type III

Sally Pirie opens up about the condition that has plagued her family for decades: Hereditary Angioedema Type III (HAE-3).

Cathy G 5/19/25 Cathy G 5/19/25

#60 CRISPR, Community, and Courage: A Deep Dive into Sickle Cell Advocacy

Fellow podcasters Wunmi Bakare and Dima Hendricks open up about their experiences living with sickle cell disease and how they have become advocates.

Cathy G 5/5/25 Cathy G 5/5/25

#59 From Diagnosis to Memoir: Laura Kieger’s Mission to Share Her Family’s FAP Story

Author Laura Kieger educates on the hereditary cancer syndrome, Familial Adenomatous Polyposis (FAP).

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).