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

#14 Multifocal Motor Neuropathy with argenx

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

#13 Medical Challenges Toolkit with Kimberly Callinan

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.

#12 Bardet Biedl Syndrome with The Alms (Part 2)

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.

#11 Bardet Biedl Syndrome with The Alms (Part 1)

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.

#10 Low Vision with Dr. Judith Goldstein

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.

#9 Wolfram Syndrome with Stephanie Gebel Snow

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.

#8 Oculoplastic Surgery with Dr. Shannath Merbs

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.

#7 Prenatal and Cancer Genetic Testing with Karen Grinzaid

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.

#6 Glaucoma with Dr. Mona Kaleem

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 glaucomaRisk factors to develop glaucomaDiagnosis of glaucomaTreatments for glaucomaRegular ophthalmologist vs specialist Mission of Diagnosis Glaucoma podcastDr. Kaleem’s research project, SightwiseGrants available for glaucoma research Advice for those with vision lossCheck 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.

#5 Wolfram Syndrome with Dr. Sarah Gladstone

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.