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

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

#Life Sciences#Health & Fitness#Personal Journals#Medicine#Science#Society & Culture

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 ItHappenedToMePod@gmail.com. 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 marketing lead and co-producer. Ashlyn Enokian is our graphic designer. And remember, it happened to me…I’m not alone and neither are you.

Episodes (25)Default

Trailer: It Happened To Me2023-01-01

We are thrilled to announce our brand new podcast, It Happened To Me, I’m not alone and neither are you. This show explores rare diseases and medical challenges. Our mission is to support you, our listeners, by creating community as you confront the toughest challenges in life. We aspire to help you overcome limitations and live a full and satisfying life. Our hosts are Cathy Gildenhorn and Beth Glassman who draw from their own health challenges while interviewing guests to capture their stories and expertise. Here’s how you can support our podcast launch: Rate & Review the podcast on Apple, Spotify, or wherever you listen. This truly helps us climb the charts and allow others to find the show. After you do that send it to a friend who you think will enjoy our podcast. And good news, you don’t have to wait long for the show, we are launching next week! Hit that subscribe button so you don’t miss it. For more information about the podcast please visit ItHappenedToMePod.com. Any guest suggestions, comments, questions, ideas, and feedback for the show, can be sent into ItHappenedToMePod@gmail.com. There is also a contact form on the website if that is easier for you. Our hosts are Cathy Gildenhorn and Beth Glassman. Our co-producers are Steve Holsonback, and myself, Kira Dineen, of DNA Today.

2 min

#1 Inspiration to Launch “It Happened To Me”2023-01-09

o-host Cathy Zacks Gildenhorn has devoted much of her life to improving the lives of others and connecting women to Jewish life and each other. She has served on several local, national and international boards. Cathy also served as presidential appointee to the United States Holocaust Memorial Council and worked on the opening of the museum. Currently, Cathy serves as editor in chief and designated spokesperson for the book, Redefining Moments: End of Life Stories for Better Living. Several years ago Cathy was diagnosed with a rare, genetic disease. Since then she has passionately dedicated her life to creating this supportive and inspiring podcast so that all in the medically challenged community know…You are Not Alone. Co-host Beth Ourisman Glassman is a third-generation Washingtonian with a deep interest in health care. She is a trustee of the Sibley Memorial Hospital Foundation in Washington and co-chair of A Woman’s Journey for the National Capital Area, the 27-year-old women’s health program established by Johns Hopkins Medicine. Beth is passionate about empowering women to make the best health care decisions for themselves and their families. Having experienced health challenges herself, she believes that the power of connection and sharing one’s own story is instrumental to the healing process. As co-host of the podcast “It Happened to Me,” she shares her ordeals, interviews guests who have experienced similar struggles, and reveals how to overcome and cope with some of the most difficult health challenges. Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor’s of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master’s of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Connecticut. On This Episode We Discuss: Idea of launching a podcast Motivation behind IHTM Choosing “It Happened To Me” Podcast title Inviting Beth to join as co-host Beth and Cathy’s rare diseases Future interviews/topics on upcoming episodes 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

21 min

#2 Glaucoma and Low Vision with Beth Glassman2023-01-09

Cathy Gildenhorn interviews her co-host Beth Glassman about her journey with glaucoma and low vision. Co-host Beth Ourisman Glassman is a third-generation Washingtonian with a deep interest in health care. She is a trustee of the Sibley Memorial Hospital Foundation in Washington and co-chair of A Woman’s Journey for the National Capital Area, the 27-year-old women’s health program established by Johns Hopkins Medicine. Beth is passionate about empowering women to make the best health care decisions for themselves and their families. Having experienced health challenges herself, she believes that the power of connection and sharing one’s own story is instrumental to the healing process. As co-host of the podcast “It Happened to Me,” she shares her ordeals, interviews guests who have experienced similar struggles, and reveals how to overcome and cope with some of the most difficult health challenges. On This Episode We Discuss: Beth’s story of glaucoma and vision loss Modification and adaptations for low vision Resources from low vision centers Advice for those with rare diseases 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

16 min

#4 Genetic Counseling for Rare Diseases with Kira Dineen2023-01-23

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. Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor’s of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master’s of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Connecticut. On This Episode We Answer: When should a person or couple consider genetic counseling? Is a referral required to see a genetic counselor? Does insurance cover genetic counseling for this? Is genetic testing done before the visit? How many visits are we talking about? Do you ever suggest adoption as an option? When? How do you help people with genetic conditions? Why get tested at all? What have you learned from interviews with patients and rare disease advocates? Do you recommend joining rare disease advocacy groups? Why study rare diseases? What is CRISPR? How could this help treat…or even cure…genetic conditions? You produce a rare disease podcast that focuses on nano rare diseases. What’s a nano-rare disease? 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

30 min

#3 Wolfram Syndrome with Cathy Gildenhorn2023-07-31

Beth Glassman interviews her co-host Cathy Gildenhorn about her rare disease, Wolfram Syndrome. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

16 min

#5 Wolfram Syndrome with Dr. Sarah Gladstone2023-07-31

Dr. Sarah Gladstone joins the show to share her perspective of Wolfram Syndrome being a parent of a child with the condition and a physician. Sarah Gladstone (She/Her) is a pediatrician who completed her MD at Vanderbilt University and pediatric residency at The Children's Hospital of Boston prior to practicing in primary care for 15 years. She began working with WS researchers and parents to facilitate communication and help find a treatment for WS after her daughter was diagnosed with WFS1-Related Disorder in 2016. Sarah started the Unravel Wolfram Syndrome Fund to support WS research by Dr. Fumi Urano at Washington University in St. Louis. She joined forces with other WS parents to help create WSRA in 2020 and the Wolfram Syndrome Global Registry in 2022. Dr. Gladstone is constantly intrigued by the connections that can be made between WS and other ER stress diseases and this inspires my continued search for repurposing of chaperones and small molecules to treat WS. She has met amazing researchers and parents who work with many different rare diseases as a result of comparing notes and progress in the rare disease treatment world. Check out unravelwolframsyndrome.com and wsresearchalliance.org, both mentioned during the show. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

38 min

#6 Glaucoma with Dr. Mona Kaleem2023-07-31

Dr. Mona Kaleem is an associate professor of ophthalmology at Wilmer Johns Hopkins in North Bethesda, Maryland. In this episode Dr. Kaleem shares her expertise about risk factors, screening, diagnosis, resources, development, and treatment for glaucoma. Dr. Kaleem shares resources including her own podcast, Diagnosis Glaucoma and Sigtwise, a project designed by Dr. Kaleem to evaluate eye clinics for accessibility. In This Episode We Discuss: Types of glaucoma Risk factors to develop glaucoma Diagnosis of glaucoma Treatments for glaucoma Regular ophthalmologist vs specialist Mission of Diagnosis Glaucoma podcast Dr. Kaleem’s research project, Sightwise Grants available for glaucoma research Advice for those with vision loss Check out Hadley.edu for further support and resources for adjusting to low vision. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

24 min

#7 Prenatal and Cancer Genetic Testing with Karen Grinzaid2023-07-31

JScreen Genetic Counselor Karen Grinzaid explains the options for genetic testing for cancer risk and the chance to have a biological child with a genetic condition. Karen A. Grinzaid is an Assistant Professor of Human Genetics and the Executive Director of JScreen, a national online genetic disease screening program based out of Emory University School of Medicine. She has extensive experience in prenatal, pediatric and adult genetic counseling and testing, as well as clinical care and clinical research. Karen is proud of JScreen’s success in helping couples across the United States have healthy babies AND in giving people information that helps prevent the devastating effects of genetic diseases and hereditary cancers. Karen received her B.A. in Psychology from Northwestern University and her M.S. in Human Genetics from Sarah Lawrence College. She is certified in Genetic Counseling by the American Board of Medical Genetics/American Board of Genetic Counseling and as a Clinical Research Coordinator through the Association of Clinical Research Professionals. Check out more about carrier screening and cancer genetic testing at JScreen.org. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

26 min

#8 Oculoplastic Surgery with Dr. Shannath Merbs2023-07-31

Oculoplastic surgeon Shannath Merbs shares her expertise in cosmetic and reconstructive surgery of the eyelids, orbit, and face. Dr. Merbs is a Professor of ophthalmology and Visual Science at the University of Maryland, School of Medicine. Dr. Merbs is an Oculoplastic surgeon specializing in cosmetic and reconstructive surgery of the eyelids, orbit and face. The discussion in this episode is in two parts. In the first half of the conversation we focus on Dr. Merbs’s surgical practice in Baltimore. The second part we dive into her research and heroic efforts to treat patients with an eye condition called Trachoma, the most common cause of blindness from infection. Blindness occurs after years of repeated infections. The eyelashes turn inward and rub the eye until the cornea turns white and the individual loses their sight. More than 2 million people are at risk. Surgery is the only cure. Dr. Merbs performs life altering surgeries in Africa and invented a surgical instrument to improve the outcome of the surgery. Our disclosure is that our co-host Beth Glassman is Dr. Merbs’ surgical patient and her hero. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

26 min

#9 Wolfram Syndrome with Stephanie Gebel Snow2023-07-31

Stephanie Gebel Snow shares her perspective as a patient advocate creating the Snow Foundation for Wolfram Syndrome research. Check out The Snow Foundation. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

38 min

#10 Low Vision with Dr. Judith Goldstein2023-07-31

Dr. Judith Goldstein shares her insight on low vision as an Associate Professor of Ophthalmology and the Chief of the Low Vision and Rehabilitation Department at Wilmer Johns Hopkins. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

45 min

#11 Bardet Biedl Syndrome with The Alms (Part 1)2023-07-31

Parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder. People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations. You can learn more about Everett in this article. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

43 min

#12 Bardet Biedl Syndrome with The Alms (Part 2)2023-07-31

Be sure to listen to part 1 in Episode #11! Parents Bonnie and Will Alms share their son's diagnostic odyssey with Bardet Biedl Syndrome. Everett’s condition is a rare genetic disorder. People may suffer symptoms that include retinal degeneration, obesity, reduced kidney function, extra digits of the hands or feet, as well as many other manifestations. You can learn more about Everett in this article. 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. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-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.

49 min

#13 Medical Challenges Toolkit with Kimberly Callinan2023-07-31

Kimberly Callinan provides a toolkit for medical challenges throughout life. Kim Callinan is the President and CEO of Compassion & Choices where she has had a leadership role in realizing patient directed end of life care for the past seven years. Kim is frequently invited to speak at conferences, testify before state legislatures, conduct policy briefings and serve on committees as an expert on end-of-life care options. In this episode our conversation will not focus on End of Life care, it will focus on helping listeners become empowered consumers. Consumers who, when faced with a serious diagnosis or medical challenge, learn to ask the right questions and consider treatment options. 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.

33 min

#14 Multifocal Motor Neuropathy with argenx2023-07-31

We have two incredible guests this episode who share their expertise about an autoimmune condition multifocal motor neuropathy: patient advocate Jennifer Burgand and argenx’s Chief Scientific Officer Dr. Peter Ulrichts. Jennifer Burgand, originally from WI moved to Atlanta, GA after college and was an elementary school teacher and assistant principal UNTIL the Big Apple called her name and she is now a successful Channel Sales Manager. Jennifer has been a fitness enthusiast since she was a young child. She was in gymnastics and dance from the age of 5 and as she got older she enjoyed working out at the gym, salsa dancing, spin classes, snowboarding, hiking, wakeboarding and I forgot to mention her love of high heel shoes. Her journey of “It happened to me” started after she moved to NYC in 2011 and began tripping on her toes and her ankle would suddenly give out during a spin class or while wearing high heels. She was eventually diagnosed with Multifocal Motor Neuropathy. You can join Jennifer’s support group, MMN Warrior, on Facebook. Peter Ulrichts obtained a PhD in immunology from the university of Ghent (Belgium). After a short post-doc period, he joined argenx in 2010 as research scientist where he was involved in the development of various therapeutic antibodies for the treatment of cancer and autoimmune diseases. In 2013, he headed the development of argenx’ FcRn antagonist Efgartigimod until the first-in-human study after which he transitioned to become the lead scientist of the efgartigimod program. Currently, he holds the position of Chief Scientific Officer and oversees the development of all clinical and pre-clinical compounds within argenx’s pipeline. For more information head over to Know Rare’s website and argenx’s website. 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/inquiri

44 min

#15 Bullous Pemphigoid with argenx2023-07-31

We have fabulous guests this episode sharing their expertise about a skin condition called Bullous Pemphigoid: patient advocate Dr. Naomi Bishop and argenx’s Associate Director of Global Patient Advocacy Shelley Gerson. Naomi Bishop, M.D. (she/her) is a physician-medical writer/editor with a rich background in the arts. Following a career in dance and graphic design, she pivoted to medicine, where she channeled her fascination with human physiology and commitment to helping others achieve optimal health. With a young family in tow, Dr. Bishop completed the required preparatory courses and attended medical school, where she graduated as valedictorian of her class. She completed her post-graduate training at New York-Presbyterian Hospital, Columbia-Cornell, and has cared for children in Pediatric Intensive Care Units (PICUs) in several top New York hospitals. Her passion for understanding systems failures led her to seek formal training in Quality Improvement and she served as director of PICU Quality and Performance Improvement for six years. She was recognized by the Solutions for Patient Safety group for her poster summarizing the impact of adding Human Factors Engineering principles to central line-associated bloodstream infection (CLABSI) prevention strategies. After witnessing the tragic death of an infant with Alveolar Capillary Dysplasia, Dr. Bishop was awarded a large CDC grant for her project designed to increase awareness of this rare, fatal lung disease. Her research produced what is still the most cited State of the Art Review on the subject. In November 2019, Dr. Bishop pivoted to a career in freelance medical writing and editing, disciplines that combine her insatiable appetite for perusing the medical literature with a dedication to improving communication between healthcare providers, their peers, and the public. Dr. Bishop remains deeply committed to patient-centered, empathic, and ethical care. As a proponent of Design Thinking and Human-Centered Healthcare Design, she strives to leverage her insights and experience to create content that is compelling and instructive. In November 2021, Dr. Bishop was diagnosed with Bullous Pemphigoid, an event that rocked her world and changed her understanding of what it means to be a patient with a rare, chronic disease. Her search for the latest treatments led her to the IPPF, an organization to which she owes boundless gratitude for supporting her journey through treatment and recovery. As of April 2023, her BP is in remission. Dr. Bishop currently shares an empty nest in New York City with her ﬁve sun-loving plants. She is a voracious reader and fitness enthusiast and savors her close relationships with her adult son and daughter. She would insist that the Atlantic, New Yorker, New England Journal of Medicine, and a beeline to the IPPF be within reach if she found herself stranded on a desert island. Our second guest is Shelley Gerson. Shelley is the Associate Director of Global Patient Advocacy at argenx. Shelley leads the advocacy efforts for alternative treatments for people living with autoimmune dermatological and hematological diseases. Previously, she worked as a patient advocate at Sanofi and Biogen. Prior to working in the biotech industry, Shelley was a licensed counselor and a private practice therapist. Shelley lives with a severe form of Hemophilia, called Hemophilia A, so she also has a personal perspective of being a patient advocate herself. During the episode both Dr. Bishop and Shelley recommended the International Pemphigus and Pemphigoid Foundation and the Facebook group, Bullous Pemphigoid Warriors. 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.

52 min

#16 ALS with Brooke Eby2023-07-31

At the age of 29, Brooke received a devastating diagnosis. After four years of confusing symptoms in her leg, Brooke Eby was diagnosed with ALS in March 2022. She hopes to spread awareness of amyotrophic lateral sclerosis (ALS) to as many people as possible and laugh along the way. Brooke has appeared as a guest on the Today Show, interviewed by Savannah Guthrie. You can also read the essay she wrote for the Today Show. Brooke, thank you so much for sharing your story with us. Listeners, you can follow along with her journey across all social media platforms at @LimpBroozkit (TikTok, Instagram, etc.). 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.

39 min

#17 Mental Health Help with Social Worker Tamara Blum2023-09-10

In this episode our guest is Tamara Blum. Tamara is a Licensed Clinical Social Worker (LCSW) in St. Louis, Missouri with a MSW from the Brown School at Washington University. She has worked with grieving families, on college campuses, and as a graduate and post-graduate level supervisor. Tamara has also served as a consultant to the National Center for Deaf-Blindness and has been providing psychotherapy and mental healthcare in her private practice serving teens, adults, couples, and families since 2012. Tamara is the proud single mom of 6 children. Her 5 surviving children includes 26-year-old Andrew who has the very rare Hattersley-Urano subtype of Wolfram Syndrome. She is an ally and an advocate at work and home and has taught her children to be the same. Tamara will appear as a guest on our next episode as well. In this episode we discuss how Tamara utilizes her training as a Licensed Clinical Social Worker (LCSW), to help listeners develop a mental health toolkit. During the episode Tamara recommended Psychology Today as a resource to find a mental health provider. She also mentioned people in the United States can call 988 which is a free 24/7 hotline for people experiencing a mental health emergency or need help in the moment. The second half of our conversation with Tamara will be featured on our next episode of It Happened To Me which will be released on August 21st. We will focus on Tamara’s role as the parent of a child with a nano rare subtype of Wolfram Syndrome. 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 logo 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.

42 min

#18 Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum2023-09-10

In this episode we continue our conversation with Tamra Blum. Tamara was on the last episode (Episode #17) of It Happened To Me where we discussed mental health. Tamara shared her expertise as a licensed clinical social worker to help listeners develop a mental health toolkit and answered several FAQs about therapy and more. Tamara is a Licensed Clinical Social Worker (LCSW) in St. Louis, Missouri with a MSW from the Brown School at Washington University. She has worked with grieving families, on college campuses, and as a graduate and post-graduate level supervisor. Tamara has also served as a consultant to the National Center for Deaf-Blindness and has been providing psychotherapy and mental healthcare in her private practice serving teens, adults, couples and families since 2012. In this episode we are discussing Tamara’s role as the parent of a child with an ultra rare subtype of Wolfram Syndrome. Tamara is the proud single mom of 6 children. Her 5 surviving children include 26-year-old Andrew who has the Hattersley-Urano subtype of Wolfram Syndrome. She is an ally and an advocate at work and home and has taught her children to be the same. 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 logo 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.

33 min

#19 Pierre Robin Syndrome with Corinne Merlino2023-09-10

Corinne Merlino was born with Pierre Robin Syndrome, a rare congenital birth defect that affects craniofacial development. Navigating life as a patient from a young age sparked her passion for science, medicine, and advocacy, and ultimately inspired her to pursue a career in genetic counseling. Corinne currently works as a clinical research coordinator for -The Palliative and Advanced Illness Research- or (PAIR) Center- at The University of Pennsylvania. There she supports multiple studies focused on improving the effectiveness and efficiency of specialty palliative care services for seriously ill patients. With our Executive Producer, Kira Dineen, Corinne also serves as Communications Lead for the DNA Today Podcast for over 3 years. Kira is also joining us today as a guest host for this conversation! In 2020, Corinne received her B.S. in Biology and Healthcare Ethics from Saint Joseph's University. Corinne is currently a graduate student in genetic counseling at the University of Pennsylvania. During the episode we mentioned Philly Phaces and the book and film Wonder. 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.

36 min

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