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It Happened To Me Podcast
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It Happened To Me Podcast
Episodes
About the Podcast
Contact
Subscribe
Episodes
About the Podcast
Contact
Subscribe
#73 Running Toward a Cure: NF2 Advocate Becomes Marathon Runner to Raise Awareness and Funds
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 12/1/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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#72 Wolfram Syndrome Expertise from Dr. Fumihiko Urano [Re-Release]
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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#71 When the Diagnosis Comes Late: Navigating Adult Wolfram Syndrome
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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#70 The First Spinraza Patients: A Rare Mama’s Advocacy for her Son with SMA
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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#68 The Hidden Danger in Newborns: OTC Deficiency Explained by a Geneticist and a Mother
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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#67 Exploring Clinical Trials in Latin America with Julio G. Martinez-Clark
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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#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed
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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#65 Invisible Swells: Surviving with Hereditary Angioedema Type III
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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#60 CRISPR, Community, and Courage: A Deep Dive into Sickle Cell Advocacy
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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#59 From Diagnosis to Memoir: Laura Kieger’s Mission to Share Her Family’s FAP Story
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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#58 Living Deafblind: Carrie Francis’ Resilience After 5th Degree Facial Cleft
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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#57 APOL1-Mediated FSGS: What Families Need to Know, from Diagnosis to Advocacy
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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#53 From Journalist to Advocate: Laura Bonnell’s Mission to Support Cystic Fibrosis Families
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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#52 Adaptive Toys for Kids with Disabilities: Inspiration from Daughter with Rett Syndrome
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 1/20/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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#51 Niemann-Pick Type C: Understanding Symptoms, Genetics, and New Treatments
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 1/6/25 Genetic Counseling, Rare Diseases, Patient Advocate 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.

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#50 Neuromuscular Neurology Explained: Symptoms, Treatments, and Advances with Dr. Bucelli
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 12/16/24 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 12/16/24

#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.

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#49 Living with NMOSD: Alex Brito's Journey of Resilience and Advocacy
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 12/2/24 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 12/2/24

#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.

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#39 Genetic Testing for Rare Diseases with Amy Patterson
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 7/1/24 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 7/1/24

#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.

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#38 Dr. Tara Zier on Stiff Person Syndrome
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/17/24 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/17/24

#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.

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#37 Congenital Hyperinsulinism with Advocate Julie Raskin
Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/3/24 Genetic Counseling, Rare Diseases, Patient Advocate Cathy G 6/3/24

#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.

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