Episodes
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In this episode we have a special discussion lined up on Bloom Syndrome, featuring our guests Melanie and Lorne Yasbin, who will share their family's experience with this rare genetic disorder.
Melanie received her J.D. from Villanova School of Law, and a B.A. in Political Communications with a minor in religion from The George Washington University.After working for the Federal government for several years, Melanie joined a private practice where she represents railroads in negotiations with each other and before Federal agencies.Melanie dedicates time to causes and organizations whose missions speak to her. She currently serves on the Boards of the JCC of Greater Baltimore and Krieger Schechter Day School (KSDS). As a member of the KSDS Board she has served as the Chairs for Development and Governance. She is also an active volunteer for the Bloom Syndrome Association.
Lorne graduated from Temple University’s School of Dentistry in 2001 as a Doctor of Dental Medicine. He previously attended Penn State, where he received a B.S. in Microbiology. For the last 21 years Lorne has been practicing general dentistry in Frederick, Maryland. In addition to practicing chair side, Lorne is the clinical director for 14 offices in Maryland. Outside of work, Lorne is in his third year of serving on the Board of the Bloom Syndrome Association where he chairs the Community Engagement committee. When he has free time, you can find Lorne trying new restaurants throughout Maryland and Delaware, exercising to work off those meals, and relaxing in Rehoboth Beach, Delaware.
Understanding Bloom Syndrome:
Bloom Syndrome is a rare genetic disorder characterized by a range of symptoms, including very short stature, light sensitivity, immune system deficiency, and a heightened risk of developing cancer at a young age. Individuals with Bloom Syndrome may also experience chronic respiratory illnesses, recurrent ear infections, and diabetes. Notably, males may face infertility, while women undergo early menopause and reduced fertility. With only a few hundred documented cases worldwide, Bloom Syndrome presents significant challenges for affected individuals and their families.
Interview Highlights:
Diagnostic Journey: Melanie and Lorne share insights into their son Brady's diagnostic odyssey, highlighting the challenges they faced in identifying Bloom Syndrome. From noticing early signs to navigating various medical appointments, they provide a firsthand account of their journey. Family Planning and Genetic Counseling: The discussion delves into the impact of Brady's diagnosis on family planning decisions and the role of genetic counseling in providing support and guidance to the Yasbin family. Managing Cancer Risk: Given the heightened risk of cancer associated with Bloom Syndrome, Melanie and Lorne discuss strategies for managing Brady's cancer risk and navigating cancer screenings and treatments. Parenting and Family Dynamics: The conversation also touches on the practical aspects of parenting a child with Bloom Syndrome, including balancing Brady's needs with those of his older brother Noah and making medical appointments a positive experience for Brady. Advocacy and Advice: Melanie and Lorne conclude by offering valuable advice to listeners and sharing their advocacy efforts for individuals with rare diseases like Bloom Syndrome.We extend our heartfelt thanks to Melanie and Lorne for their candid insights into Bloom Syndrome and their unwavering advocacy for rare disease awareness. Their story serves as an inspiration to families facing similar challenges, and we wish them all the best in their journey.
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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In our last episode (#32), we had the privilege of speaking with Matthew Goldstein, CEO of JScreen, about genetic screening. In this conversation, we are honored to welcome his wife, Myra Sack, a writer, coach, and activist, to share her family's journey and honor the memory of their daughter, Havi, who passed away from Tay-Sachs disease in 2021.
Myra Sack is not only a dedicated parent but also a passionate advocate and writer. Her memoir, Fifty-Seven Fridays, is a poignant reflection on navigating life's most painful realities and finding beauty amidst grief. With a background in social impact and bereavement care, Myra's insights offer invaluable guidance for those facing medical challenges and grief.
Exploring Tay-Sachs Disease:
- Myra shares insights into Tay-Sachs disease, educating our audience about its impact and challenges faced by individuals with the condition.
Preconception Screening Journey:
- We delve into Myra and Matthew's journey with genetic testing and preconception screening, highlighting the importance of awareness and informed decision-making.
Coping with Diagnosis:
- Myra reflects on coping with the shock and emotional impact of Havi's Tay-Sachs diagnosis, offering personal insights into their family's journey.
Fifty-Seven Fridays:
- Myra discusses her memoir, Fifty-Seven Fridays, sharing its purpose and the therapeutic process of writing it amidst grief.
Learning to Coexist with Grief:
- Myra shares wisdom on learning to coexist with grief, offering invaluable advice and insights for those facing medical challenges and loss.
Role of Support Networks:
- We explore the role of organizations like the Courageous Parents Network and E-Motion, Inc., in providing support and resources for grieving individuals and families.
Parting Words of Wisdom:
- Myra offers heartfelt advice and parting words of wisdom for our listeners, encouraging resilience and embracing community amidst challenges.
As we conclude our conversation with Myra Sack, we are reminded of the resilience of the human spirit and the power of sharing our stories to inspire and uplift others. Join us in honoring Havi's memory and embracing the journey of learning to coexist with grief.
Check out Myra’s organization, Emotion, which is for grieving individuals to find community and cope with loss. And of course, her upcoming book, Fifty-Seven Fridays, which consists of memoirs from Matt and Myra, Havi’s diagnosis, and how they celebrated her life.
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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Episodes manquant?
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A physician-scientist father shares his heartbreaking story of the death of his daughter who was diagnosed with Tay-Sachs disease and how it motivated him to become the CEO of JScreen to prevent this experience in other families.
Matt Goldstein is a physician-scientist and entrepreneur. He has founded companies, built R&D teams, and led strategy and execution of both pre-clinical research and clinical development. Prior to joining JScreen and Emory University, Matt was a Partner at Related Sciences, a venture creation firm. As an entrepreneur at Third Rock Ventures he spent a decade building and operating Third Rock portfolio companies. He was responsible for building and leading the Immunology program at Tango Therapeutics, the centerpiece of Tango’s strategic multi-billion dollar partnership with Gilead Sciences, Inc. He also served as the development head for Tango’s lead program which entered the clinic in 1H 2022. Matt was a co-founder of Neon Therapeutics leading Translational Medicine and Early Development through completion of their first clinical study and initial public offering. He is a graduate of Swarthmore College and the MD/PhD program at Stanford University, where he pioneered novel cancer immunotherapies in the lab of Ron Levy, MD. He completed his clinical training in Internal Medicine at Harvard Medical School, Brigham & Women’s Hospital. He lives in Boston with his wife, Myra, their second daughter Kaia and son Ezra. His oldest daughter Havi died on January 20th, 2021 of Tay-Sachs disease.
A quick update that during the episode Matthew mentioned there are 4,000 genetic counselors in the USA, this number has now surpassed 5,000.
During the episode, Matthew recommends the book Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief by Dr. Joanne Cacciatore.
Check out his wife, Myra’s organization, Emotion, which is for grieving individuals to find community and cope with loss.
In our next episode we will chat with Myra about Emotion and her upcoming book, Fifty-Seven Fridays, which consists of memoirs from Matt and Myra, Havi’s diagnosis, and how they celebrated her life.
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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In this episode we are learning about blood transfusion therapy with a focus on the patient experience.
Our Executive Producer, Kira Dineen, joins as a co-host since she has a scientific background.
Lori Harada is a registered nurse who also serves as Senior Manager, Technical Excellence Team, for Terumo Blood and Cell Technologies. This is a team of 12 specialists who provide education and support for both the Spectra Optia® Apheresis System and the Trima Accel® Automated Blood Collection System.
Lori is no stranger to this industry. She brings with her almost 40 years of nursing experience, 35 of those years in apheresis practice. With her vast knowledge of blood transfusion and related products in the field, Lori provides unique perspective, insight, and understanding to bear for customers, and ultimately patients, every day. Lori is a leader in the industry and has moderated several webinars for American Society for Apheresis (ASFA) and the American Society of Pediatric Hematology/Oncology (ASPHO).
During her career, Lori has held positions ranging from apheresis operations and clinical training to sales and marketing. But her true love is education. Seeing a new operator catch the passion of treating patients with apheresis is what brings her the most joy, along with instilling knowledge in her specialists so they share that passion of improving a patient’s life. In her free time, Lori enjoys living in Colorado, where she skis, hikes, and plays golf.
Carly Newton is a Registered Nurse at Terumo Blood and Cell Technologies. She has over 15 years of experience helping Healthcare Professionals that treat Sickle Cell Disease patients with Red Blood Cell Exchange all over the globe. Specializing in apheresis treatments, Carly uses that experience to educate Health Care Professionals on the most effective ways to prescribe Red Blood Cell Exchange.
By focusing on differentiating the different types of transfusion therapies available to Sickle Cell Disease patients, Carly has been able to put the Registered Nurse degree she earned at The University of South Australia to good use. Carly may spend her days at the Terumo Lakewood campus, but it’s the patients and helping them live their best lives that gets her up in the morning. When she’s not at Terumo, Carly loves spending time in the great outdoors and enjoying everything the Colorado Rockies have to offer.
If you want to learn more check out Terumo’s website 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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In honor of Rare Disease Month, we're thrilled to welcome a special guest to our podcast episode: Wes Michael, President, and Founder of Rare Patient Voice. With over two decades of experience in rare and orphan diseases, Wes has dedicated his career to amplifying the voices of patients and caregivers in medical research and development. Join us as we delve into the story behind Rare Patient Voice, its mission, and the invaluable role it plays in shaping the future of healthcare.
Before we dive into our conversation with Wes, let's take a moment to acknowledge Rare Disease Month. Did you know that Rare Disease Day falls on the last day of February? It was chosen because February, with its rarest day, the 29th, represents the perfect opportunity to raise awareness and celebrate the strength and resilience of individuals affected by rare diseases.
Now, let's turn our attention to our esteemed guest, Wes Michael. With his wealth of experience in market research and healthcare, Wes founded Rare Patient Voice in 1998 with a vision to empower patients and caregivers to make their voices heard in the medical research and development process.
Insights into Rare Patient Voice:
- Wes shares the inspiring story behind the creation of Rare Patient Voice and what inspired him to establish this organization.
- We learn how Rare Patient Voice connects patients and caregivers with opportunities to voice their opinions on medical products and services, ensuring their voices are heard and valued.
Empowering Patient Voices:
- Wes discusses how Rare Patient Voice ensures diversity and inclusivity in the patient populations it represents in research studies and surveys.
- Insights into the role of patient advocacy groups in amplifying patient voices and collaborating with Rare Patient Voice to drive impactful change.
Shaping the Future of Healthcare:
- Wes shares his perspectives on the future of rare disease research, patient engagement, and the invaluable role patient insights play in shaping healthcare advancements.
Inspiring Action:
- As we wrap up our conversation, Wes leaves our listeners with a powerful message about the importance of elevating the voices of individuals affected by rare diseases and the profound impact they have on shaping the future of healthcare.
Rare Disease Month serves as a poignant reminder of the strength, resilience, and unwavering spirit of individuals in the rare disease community. We extend our heartfelt thanks to Wes Michael for sharing his insights and dedication to empowering patient voices through Rare Patient Voice. Together, let's continue to raise awareness, drive change, and advocate for a brighter future for all those affected by rare diseases.
Be sure to check out Rare Patient Voices on their 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/inquiries can be sent to [email protected].
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In this riveting episode of 'It Happened to Me', join co-hosts Cathy Gildenhorn and Beth Glassman as they sit with Dr. Esen Akpek, a leader in corneal and stem cell transplantation. Listen as Dr. Akpek sheds light on emerging research around a groundbreaking synthetic corneal device. This conversation is a beacon of hope for those at high risk of failure from traditional donor corneal transplants and for anyone interested in advancements in ophthalmology.
Discover the intricacies of corneal transplantation, the common eye disorders that affect corneal transparency, and the importance of regular eye check-ups and vaccines in preventing such conditions. Expect a deep dive into the complexities of developing an artificial cornea, the multiple challenges faced, and the potential life-changing impact it holds for individuals around the world.
Led by Dr. Akpek's expertise and research, explore the evolving landscape of corneal transplants, the struggle with rejection rates, and the prospect of an acrylic glass cornea as a more sustainable alternative. Despite the inevitable hurdles in the journey, the promising success rate paints an optimistic future for vision impairment globally.
Be sure to check out Dr. Akpek’s previous interview on Episode #28 where she shared her expertise on dry eye, what it is and what we can do to relieve it.
Dr. Esen Akpek (she/her) is the Bendann Family Professor of Ophthalmology at The Wilmer Eye Institute, The Johns Hopkins University Medical School. Her area of expertise is in the fields of ocular surface diseases and corneal transplantation. Her current research centers around developing a synthetic corneal device for patients who are at high risk of failure with donor corneal transplantation. She combines the rare characteristics of superior surgical skill and patient empathy. You can learn more about Dr. Akpek on her Johns Hopkins’ listing here.
We would like to disclose, our co-host Beth Glassman is a patient of Dr. Akpek.
You can also 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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We are joined by Dr. Esen Akpek to discuss dry eye, what it is and what we can do to relieve it.
Dr. Esen Akpek (she/her) is the Bendann Family Professor of Ophthalmology at The Wilmer Eye Institute, The Johns Hopkins University Medical School. Her area of expertise is in the fields of ocular surface diseases and corneal transplantation. Her current research centers around developing a synthetic corneal device for patients who are at high risk of failure with donor corneal transplantation. She combines the rare characteristics of superior surgical skill and patient empathy. You can learn more about Dr. Akpek on her Johns Hopkins’ listing here.
We would like to disclose, our co-host Beth Glassman is a patient of Dr. Akpek.
Dr. Esen Akpek joins us again on “It Happened To Me” in our next episode where we will chat about corneal transplantation. 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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Two experts from the Prevention of Blindness Society: Sean Curry and Caren Forsten, join as our guests for our first episode of 2024!
Sean Curry, MPH, serves as program director for the Prevention of Blindness Society (POB) of Metropolitan Washington. In this role, he oversees the POB’s comprehensive suite of low vision programs, the See For Yourself screening and education program, and program measurement and evaluation activities. Sean also provides guidance for POB’s public health information initiatives.
Previously, Sean worked in public health promotion with Penn Medicine Lancaster General Health. Sean earned his Bachelor of Science in biology and health science from Lebanon Valley College, and his Master of Public Health from The George Washington University.
Caren Forsten, CEO, is POB’s fifth chief executive in its more than 85-year history, Caren brings extensive leadership experience in both the private and nonprofit sectors. Most recently, Caren served as director of marketing with Verizon. She has a demonstrated history of success in improving client service experiences through relationship building, meaningful communications, and high-performing, cross-functional teams. This experience is invaluable to her role at POB, leading efforts to increase partnerships and community awareness of POBs work.
Caren earned her Bachelor of Science from the University of Tennessee, Knoxville, and Master of Business Administration from the University of Maryland, College Park. She is actively involved in her community through nonprofit organizations such as The George Washington University Hospital and the Junior League of Washington.
Access the resources mentioned during the interview here:
POB Website
Monthly Newsletter
glaucomadc.org
Tour Of The Eye
Webinars via YouTube
Prevention of Blindness Society of Metropolitan Washington 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 [email protected].
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We are thrilled to have Dr. Fumihiko Urano on “It Happened To Me” as he is our co-host Cathy’s lead doctor, for her variant of the rare disease, Wolfram Syndrome.
Fumihiko “Fumi” Urano, MD, Ph.D., is a Physician and Medical Researcher specializing in Wolfram syndrome, characterized by juvenile-onset diabetes, vision loss, and neurodegeneration. Dr. Urano is a Professor of Medicine and Pathology & Immunology, an attending physician at Endocrinology Genetics Clinic, and currently holds Samuel E. Schechter Endowed Professorship in Medicine at Washington University Medical Center, St. Louis, USA. Dr. Urano is a driving force in the study of Wolfram syndrome and Related Disorders, including WFS1-related disorders/Wolfram-like disorders. As the Director of the Wolfram Syndrome and Related Disorders Clinic and Study at Washington University Medical Center, Dr. Urano has been leading the clinical, translational, and interventional studies of Wolfram syndrome and Related disorders. Dr. Urano's collaboration with colleagues at the medical center and around the world has allowed him to develop cutting-edge treatments for this disease, including gene therapy and regenerative therapy.
Learn more on their Wolfram syndrome website, wolframsyndrome.wustl.edu. If you want to reach out directly you can contact the Research Nurse Coordinator Stacy Hurst, RN, CDE by calling 314-747-3294 or emailing [email protected].
During the episode Dr. Urano mentioned two episodes of “It Happened To Me”: during this episode. The first was our interview with Dr. Gladstone in Episode 5. He also gave a shoutout to our conversation with Stephanie Snow Gebel (Snow Foundation) in Episode 9.
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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Pancreatic cancer occurs when a cell in the pancreas is damaged, causing the malignant or cancer cell to form in the tissue of the pancreas. The pancreas is a gland about 6 inches long and is shaped like thin pear lying on its side. The pancreas lies between the stomach and the spine.
The risk of developing pancreatic cancer increases with age, with about ⅔ of patients being diagnosed at age 65 or older. Slightly more men than women are affected.
Cigarette smoking is one of the biggest risk factors. Other risk factors include:
Being overweightPersonal history of diabetes andFamily history of pancreatic cancer or pancreatitisLike most cancers, early detection is critical. Survival rates are impacted by tumor size and whether the cancer has spread to other organs.
In this episode we are joined by Leslie Waldman, who has a personal diagnosis of pancreatic cancer, which she has lived with for 10 years. Leslie Waldman is director of Consumer and Physician Engagement at Johns Hopkins Medicine. During the last four decades, he has served Johns Hopkins in many capacities including director of strategic marketing, director of competitive strategy for Johns Hopkins Medicine and as director of public affairs for the Johns Hopkins University School of Public Health.
Throughout her career, she has blended strategy planning and marketing, public affairs and consumer health education to affect change and motivate consumers towards healthier living. Resulting programs have included community-based screening programs for Tay-Sachs disease and lead poisoning; the award-winning health portfolio, A Woman’s Journey; and strategic marketing programs for women’s health, many clinical programs and recruitment of volunteers for clinical trials The Association of American Medical Colleges has honored her work for the digital program, COVID -19: One Year Later; re branding Johns Hopkin Medicine, marketing the Johns Hopkins Breast Center, advertising during open enrollment, the publication of Estrogen Replacement Therapy: The Johns Hopkins Guide to Making an Informed Decision; and marketing for the Johns Hopkins Asthma and Allergy Center.
Ms. Waldman has a masters in science in health education from the Johns Hopkins University Bloomberg School of Public Health and a BA from the Newhouse School of Communications and the College of Liberal Arts at Syracuse university.
Check out “A Woman’s Journey: Healthy Insights That Matter” on Apple Podcast here. There is also an archive here. We also encourage you to explore the resources offered by PanCan and Lust Garden. You can also reference the NCCN guidelines for pancreatic cancer 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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We are honored to have Dr. Andrew Carey as a guest on this episode of on It Happened To Me. As a disclosure, Dr. Carey is our co-host Cathy Gildenhorn’s Doctor who diagnosed her rare disease, Wolfram Syndrome.
Andrew R. Carey, MD (he/him) is an Assistant Professor of Ophthalmology in the division of Neuro-Ophthalmology at the Wilmer Eye Institute. He specializes in neuro-ophthalmic disorders such as optic neuritis, uveitis related papillitis, ischemic & hereditary optic neuropathies as well as diseases of the retina, including age-related macular degeneration, diabetic retinopathy, toxic retinopathies and inherited disorders of the retina such as retinitis pigmentosa.
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 [email protected].
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Dr. Colby Kash is featured on this episode of “It Happened To Me”. Dr. Kash is the author of The Autoimmune Plague: How to Regain Sovereignty Over Your Body and Life.
He is an author who has pivoted out of clinical practice and is dedicated to improving health through modern technologies and evolutionary biology. Dr. Kash is also a lecturer on wellness and a co-founder of biotechnology companies and an investment group.
Dr. Kash has experienced his own set of Medical Challenges. Crippling digestive issues that advanced to Crohn’s disease, as well as psoriasis and inflammatory arthritis. Determined to find the root causes, he developed a blueprint to combat the wide range of psychological, emotional, physical and environmental stress factors that contribute to autoimmune diseases. In the end, this blueprint gave HIM his health back. He hopes to share his approach with others suffering the debilitating effects of autoimmune disease.
Dr. Kash has a Doctor of Chiropractic, a Masters in Applied Clinical Nutrition and several certifications reflecting his passion within health, wellness and longevity.
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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Carly Flumer was diagnosed with stage I papillary thyroid cancer at the age of 27 and again at 31. While being diagnosed with cancer at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy. She received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy.
Resources from the episode…
Thyca
Elephants and Tea
Cactus Cancer Society
National Cancer Institute
GRYT Health
American Cancer Society
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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We are releasing this episode in honor of Wolfram Syndrome Global Awareness Day which is celebrated on October 1st. The Wolfram Syndrome community worldwide is working to increase awareness and ultimately find a cure for Wolfram Syndrome. To learn more about Wolfram you can also listen to Episodes 3, 5, 9, and 18 of It Happened To Me.
Pat Gibilisco is Patient Advocacy Liaison for the Snow Foundation for Wolfram Syndrome research. Pat is Co-Founder of the first Wolfram Syndrome Website and Family Support Group, which launched in 1998 when her 12-year-old daughter, Lauren, was first diagnosed with Wolfram Syndrome. In 2021, Lauren passed in her mid-30s.
In the 90s, Pat contacted Dr. Timothy Barrett, the only known doctor affiliated with this disease, and with Dr. Barrett’s help she was introduced to other Wolfram families. In 2000, Pat contacted the late Dr. Alan Permutt who discovered the WFS1, Wolfram gene. Pat was instrumental in getting Dr. Permutt to Washington University in St Louis. Dr. Alan Permutt conducted the first Wolfram syndrome research clinic, which included Lauren and six other patients in 2010.
Pat is the administrator for the Wolfram Syndrome family private Facebook page. She is passionate about educating and supporting patients, families and caregivers affected by Wolfram syndrome. She offers valuable insight, and resources and connects others who live with this rare disease. She is committed to growing the patient advocacy community, which currently includes over 370 families. Pat is and Lauren was, a strong advocate for Wolfram Syndrome and have spoken at several Wolfram Syndrome fundraisers to help raise money for research and ultimately a cure.
In this episode we discuss Wolfram Syndrome, a rare recessive genetic condition. Wolfram Syndrome is difficult to diagnose but symptoms include diabetes, optic nerve atrophy, vision loss, deafness, loss of taste and smell, and urinary and bladder dysfunction. Our co-host, Cathy Gildenhorn, was diagnosed with a mild, adult onset variant of this neuro degenerative 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. 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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In this episode of It Happened To Me we are learning about the genetic conditions Familial Dysautonomia with three lovely guests: Lanie Etkind, Rita Taryan, and Keshi Taryan-Kigel.
Lanie Etkind was appointed Executive Director of the Familial Dysautonomia Foundation in 2017. Lanie's professional background has included fundraising roles in both healthcare and the performing arts. Lanie recently completed a Certificate program in NonProfit Leadership in cooperation with Northwestern University.
Rita Taryan and her daughter, Keshi Taryan-Kigel, also join the show. Keshi is a Familial Dysautonomia (or FD) patient in her early 30s and she and her mom will provide a personal perspective about living with and managing the symptoms of FD.
Learn more on Familial Dysautonomia Foundation’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 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 [email protected].
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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 [email protected].
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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 [email protected].
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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 [email protected].
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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 [email protected].
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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 [email protected].
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