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It Happened To Me: A Rare Disease and Medical Challenges Podcast

Cathy Gildenhorn, Beth Glassman, and Kira Dineen (DNA Today)
It Happened To Me: A Rare Disease and Medical Challenges Podcast
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  • #63 Redefining “Incompatible with Life”: A Mother’s Mission for Trisomy 18 Awareness Part 1
    In this powerful episode of It Happened To Me, co-hosts Cathy and Beth sit down with Sarita Edwards, an award-winning advocate, rare disease leader, and mother to Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.   Topics Covered: What is Trisomy 18 and how it affects the body Elijah’s diagnosis and how it shaped Sarita’s life and career The challenges of hearing “incompatible with life” as a parent Misconceptions about children living with Trisomy 18 Elijah’s involvement in Special Olympics and celebrating milestones The origin and mission of the E.WE Foundation   Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita’s own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen’s on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to [email protected].
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  • #62 Vision Through Music: Empowering Visually Impaired Kids with Adaptive Music Education
    In this inspiring episode, we’re exploring the powerful intersection of music and accessibility with three incredible guests: Dr. Bradley Black, a world-renowned pediatric ophthalmologist and founder of the Vision Through Music program, Makayla, a passionate young musician and student in the program, and Maykaya’s mother Joann.  Dr. Bradley Black (he/him) practiced pediatric ophthalmology and strabismus in Baton Rouge, Louisiana. He is past president of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS) and the Louisiana Academy of Eye Physicians and Surgeons (LAEPS). He has served on the boards of directors of AAPOS, the Children’s Eye Foundation, the Smith-Kettlewell Eye Research Institute, and LAEPS. He received the Honor Award, Senior Honor Award, and the Lifetime Achievement Award from AAPOS and the Achievement Award, Secretariat Award, and the Outstanding Advocate Award from the American Academy of Ophthalmology. He was elected to the American Ophthalmological Society. In 2024, he received the Parks Silver Medal, the highest honor awarded by AAPOS and CEF-AAPOS. Dr. Black is active in international ophthalmology. He served on the Orbis International Cybersight Medical Advisory Board and has performed and taught pediatric eye surgery in more than thirty countries.  One of his greatest professional achievements to date is founding the Vision Through Music program of the Children's Eye Foundation, which seeks to increase the number of music teachers who work with blind and partially sighted children nationwide. He and his wife, Cindy, have two children and two grandchildren. In his leisure time, you can often find Dr. Black sailing the Gulf of Mexico on his thirty-five-foot sloop.   Makayla Alger (she/her) is a passionate student of the Children’s Eye Foundation’s Vision Through Music Program (VTM). From an early age, she found joy in singing and playing on her sister’s keyboard. She is currently learning violin and will soon begin voice lessons through the VTM program. Makayla lives with a mutation to the TUBB4B gene, which has led to degenerative vision and bilateral sensorineural hearing loss. Over time, she has lost night vision, experienced a decrease in peripheral vision, and developed nystagmus. Her mother, Joann, vividly remembers taking Makayla to a pediatric ophthalmologist, who determined she would need glasses for life. Initially overwhelmed and unsure whether her young daughter would keep them on, Joann recalls when Makayla looked up at her parents and with a soft voice appreciatively said, “thank you.” From that moment, she never took her glasses off. Joann says the family has gotten creative to make things more accessible at home. Beyond her love of music, Makayla is also the author of “The Way I See It”, a story following Elena, a visually and hearing-impaired red fox who navigates Vermont’s scenic trails using her heightened senses. Along her journey, Elena meets many woodland creatures and teaches them important lessons about awareness, kindness, and understanding. Makayla and her mom Joann hope to raise awareness about TUBB4B genetic testing, as well as encourage more research into its progression and ultimately a cure. Whether you’re a parent, educator, healthcare provider, or music lover, this conversation will show you just how transformative inclusive programming can be. Mentioned in this episode: Vision Through Music program: VisionThroughMusic.org or email [email protected] Academy of Music for the Blind: ouramb.org Makayla’s book, The Way I See It available here on Amazon. Girl Scouts of America: GirlScouts.org  Summer Camp IN-SIGHT: in-sight.org/camp Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to [email protected].   
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  • #61 How Jack’s Basket Is Changing the Down Syndrome Diagnosis Story
    In this heartfelt episode we welcome guest Carissa Carroll, M.Ed., Founder and Executive Director of Jack’s Basket, a nonprofit that has transformed the way families experience a Down syndrome diagnosis. A former educator with degrees from Bethel University and the University of Minnesota, Carissa taught at both the elementary and collegiate levels. But her life—and her mission—changed forever after the birth of her son Jack, and an abrupt, assumptive diagnosis experience. Determined to ensure future families would feel supported, celebrated, and connected, Carissa launched Jack’s Basket in Jack’s honor. Since then, over 11,000 families in 55 countries have received baskets filled with love, resources, and messages of hope. Carissa now leads her organization full-time and presents to healthcare professionals nationwide on how to deliver diagnoses without bias, while also engaging donors and volunteers who help carry out Jack’s Basket’s powerful mission. Topics Covered: What is Down syndrome and how it affects individuals and families Carissa’s personal story of receiving Jack’s diagnosis and the emotional impact The inspiration behind launching Jack’s Basket What’s inside a welcome basket and how it brings comfort to new families Carissa’s advocacy for bias-free diagnosis delivery in medical settings Common misconceptions about Down syndrome Why early connection and community support are crucial Memorable moments from Jack’s life and the families they’ve served Advice for new parents, healthcare providers, and loved ones welcoming a baby with Down syndrome Media highlights, including Carissa’s appearance on The Kelly Clarkson Show and DNA Today podcast (Episode #333) Jack’s Basket Resources: Jack’s Basket Website Request a Basket Genetic Counseling Webinar: "Communicating Unexpected News"   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to [email protected].
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  • #60 CRISPR, Community, and Courage: A Deep Dive into Sickle Cell Advocacy
    In this powerful episode of It Happened To Me, co-hosts Cathy Gildenhorn and Beth Glassman are joined by two fierce patient advocates and changemakers in the sickle cell disease community: Wunmi Bakare and Dima Hendricks. Both women are living with sickle cell disease and have transformed their lived experiences into platforms for storytelling, education, and change.   They are also the co-hosts of #ThroughTheGenes, a podcast that launched last year on World Sickle Cell Day (June 19, 2024). The show explores gene therapy and other innovative treatments for sickle cell disease while centering patient voices. With a second season debuting again on June 19th (exactly a month from today!), Wunmi and Dima continue to bring much-needed visibility to a condition that is often misunderstood and underfunded. And they will be joined by a new dynamic host, Christelle Salomon!   Topics Discussed: What is sickle cell disease and how it impacts daily life The emotional and physical toll of living with a chronic, invisible illness Medical gaslighting and how to advocate for yourself Finding community and realizing you’re not alone Blending identity, advocacy, and creativity in the public eye Insights into gene therapy, including CRISPR technology and treatment considerations Health equity and why access to care must be a priority in the sickle cell space The power of patient-centered storytelling through #ThroughTheGenes podcast   During the episode Beth referenced a previous episode with someone who has pancreatic cancer, you can listen to Leslie Waldman’s full interview on Episode 25 here.    Catch up with all of season 1 of #ThroughTheGenes podcast right now, before season 2 launches on World Sickle Cell Day on June 19th, 2025.    Both podcasts, It Happened To Me and #ThroughTheGenes are part of Gene Pool Media, the science podcast network. Be sure to check out all these science shows, many of which discuss medical challenges.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to [email protected]
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  • #59 From Diagnosis to Memoir: Laura Kieger’s Mission to Share Her Family’s FAP Story
    In this powerful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn are joined by author, advocate, and healthcare leader Laura Kieger, who shares her family’s deeply personal journey with FAP (Familial Adenomatous Polyposis), a rare genetic condition that significantly increases the risk of colorectal and other cancers. Laura’s memoir, Summer’s Complaint, chronicles the emotional and medical challenges her family has faced across generations, from diagnosis and genetic testing to coping with loss and finding resilience. As someone who tested negative for the familial mutation herself, Laura also opens up about "survivor’s guilt", the burden of watching loved ones endure cancer, and how her work in healthcare and leadership has informed her approach to caregiving and advocacy. Whether you're living with a hereditary cancer condition, supporting someone who is, or simply seeking to understand the human side of genetic risk, this episode offers insight, education, and compassion. Topics Covered: What FAP is and how it differs from other hereditary cancer conditions Laura’s family’s diagnosis journey and how it shaped their approach to screening and prevention The emotional experience of receiving a negative genetic test result when others in your family test positive The value of genetic counseling and early detection Misconceptions about FAP and what patients and families should really know How storytelling can raise awareness and build advocacy for rare diseases Highlights from Laura’s memoir, Summer’s Complaint, and what she hopes readers take away Laura Kieger is a healthcare human resources consultant, leadership coach, and author of Summer’s Complaint. With decades of experience improving patient and employee experiences in healthcare settings, Laura brings both professional and personal insight to the conversation around rare diseases and inherited cancer risk. She’s also a passionate advocate and speaker for organizations like the Ronald McDonald House and Care Partners.   Be sure to purchase your own copy of Laura’s memoir Summer’s Complaint; all proceeds go to continuing education credits for healthcare providers about hereditary cancer syndromes. During the episode Laura also mentioned a study about green bananas here and a private Facebook support group here.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to [email protected].   
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Über It Happened To Me: A Rare Disease and Medical Challenges Podcast

The mission of our podcast is to support you, our listeners and to create community, as you confront the toughest challenges in life. All of us will experience health hardships. The real question is how we adapt. That is the focus of It Happened To Me, which wants to help you overcome limitations and live a full and satisfying life. Drawing on their own health challenges, hosts Cathy Gildenhorn and Beth Glassman interview guests who share stories and research to help you succeed in the face of difficult health obstacles. It happened to me…I’m not alone and neither are you. We encourage you to learn more at ItHappenedToMePod.com. Please use the contact form on our website to submit your guest suggestions, comments, questions, ideas, and feedback for the show, you can also email us directly at [email protected]. It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our ...
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