#78 Sudden Vision Loss and Giant Cell Arteritis: When “Healthy” Changes Overnight
One woman’s story of autoimmune disease, emergency diagnosis, and life after vision loss.
#77 When Chronic Illness Changes the Tune: A Musician’s Journey Through Diabetes and Stroke
Carolyn Routh, of the band Nu-Blu, opens up about health, resilience, and returning to the stage after life-altering medical events.
#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.
#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.
#74 Genetic Counseling for Rare Diseases with Kira Dineen [Re-Release]
Genetic Counselor, and our podcast co-producer, Kira Dineen shares her insight on when to pursue genetic counseling and how genetic counselors can help people in the rare disease community.
#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.
#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.
#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.
#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).
#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?
#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.
#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.
#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.
#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).
#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.
#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.
#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.
#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.
#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.
#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).