In this heartfelt episode of It Happened To Me, we’re turning the microphone inward as co-host Beth Glassman interviews her co-host and dear friend, Cathy Gildenhorn. Cathy shares her deeply personal journey through family planning, recurrent miscarriages, and adoption, offering hope and guidance to listeners navigating similar challenges.

Cathy’s story is one of resilience, love, and the transformative power of creating a family through adoption. From the emotional toll of miscarriages and ectopic pregnancies to the joy of welcoming her children into her life, Cathy provides an honest and inspiring look at her path to motherhood.

• The emotional and physical challenges of recurrent pregnancy loss (miscarriages)
• Understanding ectopic pregnancies and the medical procedures involved
• The role of hormones in fertility treatments and their potential health risks
• Deciding to pursue adoption: expectations, processes, and challenges
• Choosing an adoption agency and navigating the legal requirements
• Sharing adoption stories with children and discussing birth parents
• Reflections on the adoption experience and advice for others

Cathy’s openness and compassion shine through as she discusses how her experiences have shaped her perspective on family and advocacy. Whether you’re considering adoption, struggling with infertility, or simply looking for an inspiring story, this episode is a must-listen.

• Gladney Center for Adoption
• National Council for Adoption
• The Barker Adoption Foundation
• It Happened To Me’s Episode #41 Colleen Gioffreda also shares her experience adopting children and helping other kids be placed with families.

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 ItHappenedToMePod@gmail.com.

In this episode of It Happened To Me, co-hosts Beth Glassman and Cathy Gildenhorn sit down with Laura Bonnell, a seasoned journalist with 25 years of experience in Detroit, founded The Bonnell Foundation in 2010 after her daughters, Molly and Emily, were born with cystic fibrosis (CF). Despite having ten siblings between them, Laura and her husband, Joe, had no idea they were carriers of the disease, as no one else in either family had been diagnosed with CF.

Driven by her personal experience and professional expertise, Laura used her platform as a reporter to raise awareness about CF. Before establishing The Bonnell Foundation, she actively raised funds for the Cystic Fibrosis Foundation, participating in the Great Strides Walk fundraisers and speaking at CFF events. Bonnell also organized events like the first Celebrity Softball game with the Detroit Tigers’ wives and launching the "Portraits of Cystic Fibrosis" calendars in 2003—both of which are integral to The Bonnell Foundation's fundraising efforts today.

Through her foundation, Laura continues to advocate tirelessly for those affected by CF, leveraging her journalistic skills to amplify the cause and support the CF community.

• Understanding Cystic Fibrosis: What it is, how it affects the body, and the daily medical routines required to manage it.
• Personal Journey: Laura’s experience with her daughters’ diagnoses and the challenges her family faced.
• Advocacy Through Journalism: How Laura’s skills as a journalist influenced her podcast, Living With Cystic Fibrosis, and her advocacy work.
• The Bonnell Foundation: From organizing the first Celebrity Softball game with the Detroit Tigers’ wives to producing the "Portraits of Cystic Fibrosis" calendars, Laura discusses her foundation’s mission and impact.
• Challenges and Progress: The evolving landscape of CF treatment, including the life-changing potential of medications like Trikafta.
• Community Support: How The Bonnell Foundation helps families navigate life with CF and fosters a sense of connection.

• The Bonnell Foundation
• The Bonnell Foundation Facebook
• The Bonnell Foundation X
• The Bonnell Foundation Instagram
• Living With Cystic Fibrosis Podcast

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 ItHappenedToMePod@gmail.com.

In this episode of It Happened To Me, we’re honored to welcome Sam Ahlstrom, father to Zoey, a remarkable young girl living with Rett syndrome. Sam shares his family’s journey from diagnosis to advocacy, offering an inspiring look into how they’ve transformed challenges into opportunities for connection and innovation.

Rett syndrome is a rare neurological disorder that impacts nearly every aspect of life, from mobility to communication. Sam recounts his family’s experience navigating this complex condition, from recognizing the early signs to adapting their daily routines. He also discusses the emotional and practical hurdles they faced as parents and how they found strength through community and creativity.

• What is Rett syndrome? Sam explains the condition and its impact on individuals like Zoey.
• The diagnostic journey: How Sam and his wife Sarah discovered Zoey’s condition and adapted to the new challenges it brought.
• Creating connection during isolation: The inspiration behind the pRETTy happy. podcast, which became a lifeline for their family and others during the pandemic.
• Innovative solutions for complex needs: Sam shares the mission of pRETTy happy. place, the company he and Sarah founded to develop adaptive equipment and toys that bring joy and independence to individuals with complex medical needs.
• Building a community: Sam reflects on the importance of connection and support for families navigating rare diseases like Rett syndrome.

1. The power of resilience: How Sam’s family turned challenges into opportunities for advocacy and innovation.
2. The importance of community: Building connections with others who understand the journey can make all the difference.
3. Creativity in action: How pRETTy happy. place is making life easier and more joyful for families like theirs.

• Listen to the pRETTy happy podcast
• Check out pRETTy happy place’s shop
• pRetty happy place’s Ep 23 and Ep 24 with Colleen English

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 ItHappenedToMePod@gmail.com.

In this episode of It Happened To Me, we dive into the world of Niemann-Pick Type C (NPC), a rare genetic condition that affects fewer than 1,000 people in the United States. NPC is a progressive disorder impacting the brain, nerves, and major organs, often referred to as "childhood Alzheimer’s" due to its neurological effects.

Our guests bring both personal and professional expertise to the conversation:

• Barbara Lazarus is the mother of two adult sons (now in their 30s), who have Niemann-Pick Type C disease. David is taking Myplyffa, through an expanded access program. Both David and her brother Daniel have been seen at UCSF Benioff Oakland Children’s Hospital in the Bay Area of California. She is a knowledgeable patient advocate of NPC.
• Dr. Caroline Hastings is a Pediatric Hematologist Oncologist and Professor of Pediatrics at UCSF Benioff Children's Hospital Oakland. In addition to her specialization in pediatric cancer and blood diseases, including a focus on tumors of the brain and spinal cord, her clinical and academic interests have focused on children and adults with rare lysosomal storage diseases. Her particular area of expertise and interest is in Niemann-Pick Type C disease, a rare debilitating genetic disease that until now has been elusive to a therapeutic intervention. She has been involved in developing new drugs and treatment strategies with the hope to improve quality of life and longevity for these patients.C.

Together, they provide a comprehensive look at NPC, from its symptoms and genetic causes to the challenges of diagnosis and the hope brought by new FDA-approved treatments like Miplyffa.

• How Niemann-Pick Type C affects the body.
• Early signs, symptoms, and progression of NPC in children and adults.
• The genetics of NPC and its inheritance patterns.
• The challenges of diagnosing such a rare condition and the role of genetic counseling.
• Insights into the newly FDA-approved treatment, Miplyffa, and its impact on patients like Barbara’s son David.
• The importance of specialized medical centers for NPC care and the role of advocacy and community support.

• NPC is caused by mutations in the NPC1 and NPC2 genes, leading to the buildup of cholesterol and lipids in cells.
• Early diagnosis and specialized care are crucial for managing the condition and accessing treatments.
• The approval of Miplyffa marks a significant milestone, offering new hope for families affected by NPC.

• UCSF Benioff Oakland Children’s Hospital Neurology Center
• National Niemann Pick Disease Foundation
• Information on FDA-approved treatments like Miplyffa

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 ItHappenedToMePod@gmail.com.

To celebrate our 50th episode we are honored to welcome Dr. Robert Bucelli on the show. He is a leading expert in neuromuscular neurology and a dedicated advocate for advancing treatments for neuromuscular disorders.

In this episode, Dr. Bucelli shares his wealth of knowledge on neuromuscular neurology, exploring topics such as:

• What neuromuscular neurology entails and who is affected.
• The role of genetics in diagnosing and treating neuromuscular disorders.
• Common symptoms, risk factors, and diagnostic approaches.
• How therapies like physical and occupational therapy play a role in management.
• Lifestyle modifications, including diet and exercise, to minimize risk.
• The latest advancements in research and treatment, including ASO therapy.
• Strategies for coping with the challenges of living with neuromuscular conditions.

Dr. Bucelli has been a practicing neurologist at the ALS Clinic since 2011. He is an Associate Professor of Neurology at the Washington University School of Medicine in St. Louis where he serves as the Site Principal Investigator on several clinical studies relating to ALS.

After graduating summa cum laude from Canisius College in Buffalo, New York with a degree in biology, Dr. Bucelli went on to receive his medical degree and PhD from the State University of New York at Buffalo as part of the Medical Scientist Training Program. He then completed an internship in internal medicine and postgraduate residency in neurology at Barnes-Jewish Hospital and the Washington University School of Medicine, followed by a postgraduate Clinical Fellowship Training Program in the Department of Neurology’s Neuromuscular Section, also at Barnes-Jewish and Washington University. He is also a graduate of the Washington University and Barnes-Jewish Hospital Academic Medical Leadership Program for Physicians and Scientists.

Dr. Bucelli is expert in diagnosing and treating neuromuscular disorders including amyotrophic lateral sclerosis. He also reads and interprets muscle and nerve biopsies to aid in the diagnostic evaluations of patients seen at Washington University and many additional outside institutions. Dr. Bucelli’s clinical expertise guides exemplary multidisciplinary ALS care in the neuromuscular clinic. His skill in delivering drugs to the fluid surrounding the spinal cord has enabled Dr. Bucelli’s and Washington University’s leadership in trials using to turn off the production of harmful genes that cause ALS.

Dr. Bucelli has received numerous awards for excellence in teaching and clinical work at Washington University. He is a five-time recipient of the Eliasson Award for Teaching Excellence and has authored over 40 peer-reviewed manuscripts. He is a frequently invited guest lecturer and presenter at regional and national conferences.

Stay tuned for the next new episode of “It Happened To Me” in the New Year on January 6th, 2025! 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 ItHappenedToMePod@gmail.com.

In this inspiring episode of It Happened To Me, hosts Cathy and Beth sit down with Alex Brito, a remarkable advocate in the rare disease community and one of the first 100 individuals diagnosed with neuromyelitis optica spectrum disorder (NMOSD). NMOSD is a rare neurological disease that affects an estimated 6,000 Americans, causing severe and unpredictable relapses that can lead to vision loss, chronic pain, and paralysis.

Alex shares her journey, from the challenges of misdiagnosis and temporary paralysis to her empowering outlook on life with NMOSD—she affectionately refers to the condition as “her bestie.” Alex’s dedication to advocating for individuals with disabilities is evident in her work teaching adaptive technology to those with vision loss. Her incredible resilience is matched by her active lifestyle, which includes powerlifting and earning the distinction of being the first blind woman to achieve a yellow belt in Krav Maga.

Listeners will also learn about Alexion's short film, Rare Connections in NMOSD (Accessible Version), which highlights Alex’s story and helps raise awareness about this rare disease.

Key Takeaways:

• What is NMOSD, its symptoms, and the challenges in diagnosing this rare condition.
• Alex’s personal journey with NMOSD, including vision loss, paralysis, and finding strength in adversity.
• The importance of adaptive technology and how Alex empowers individuals with vision loss.
• Alex’s inspiring accomplishments as a powerlifter and martial artist.
• Insights into Alexion’s short film Rare Connections in NMOSD and its impact on awareness and advocacy.

Resources Mentioned in This Episode:

• Watch Alexion's short film, Rare Connections in NMOSD here
• Alex mentioned using JAWS, a screen reading program for those with vision difficulties
• Support organizations for NMOSD that Alex recommends in the episode are The Guthy-Jackson Foundation and The Sumaria Foundation
• Learn more about NMOSD through the organization NMOSD Won’t Stop Me

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 ItHappenedToMePod@gmail.com.