Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 11/17/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 11/3/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 10/20/25 Genetic Counseling, Rare Diseases, Patient Advocate 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).

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 10/6/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 10/6/25

#69 Breath by Breath: Kenny Kasnett’s Journey Through Lung Disease and Transplant

Kenny Kasnett, a seasoned executive and entrepreneur whose life took an unexpected turn with a diagnosis of interstitial lung disease (ILD) leading to a choice, should he get a lung transplant?

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 9/15/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 9/1/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 8/18/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 8/4/25 Genetic Counseling, Rare Diseases, Patient Advocate 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).

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 7/21/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 7/21/25

#64 Challenging the Label: Living and Thriving with Trisomy 18 Part 2

Sarita Edwards on parenting through Trisomy 18 and building a global support network.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 7/7/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 7/7/25

#63 Redefining “Incompatible with Life”: A Mother’s Mission for Trisomy 18 Awareness Part 1

Sarita Edwards on parenting through Trisomy 18 and building a global support network.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/16/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/16/25

#62 Vision Through Music: Empowering Blind and Visually Impaired Kids with Adaptive Music Education

Music can change everything: for children with vision loss, it opens a world of opportunity. Founder of Vision Through Music shares about the program with a current student.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/2/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/2/25

#61 How Jack’s Basket Is Changing the Down Syndrome Diagnosis Story

Carissa Carroll shares how her non-profit empowers 11,000+ families, educates professionals, and celebrates babies with Down syndrome. 

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 5/19/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 5/5/25 Genetic Counseling, Rare Diseases, Patient Advocate 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).

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 4/21/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 4/7/25 Genetic Counseling, Rare Diseases, Patient Advocate 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).

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 3/17/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 3/17/25

#56 Navigating Dual Diagnoses: Amy Raskin Shares Parenting Strategies for Diabetes and Celiac

One parent's experience managing her child’s two conditions: type 1 diabetes (T1D) and celiac disease.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 3/3/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 3/3/25

#55 Growing Up with a Childhood Autoimmune Disease with Beth Glassman

Host Beth Glassman opens up about her experience in childhood with the autoimmune condition uveitis.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 2/17/25 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 2/17/25

#54 Family Planning Challenges: Cathy Gildenhorn on Miscarriages and The Miracle of Adoption

Host Cathy Gildenhorn opens up about her path to parenthood starting with recurrent miscarriages and ending with the miracle of adoption.

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Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 2/3/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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