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

#30 Rare Disease Advocacy with Wes Michael

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 ItHappenedToMePod@gmail.com. 

#29 Exploring the Potential of Artificial Corneas with Dr. Esen Akpek

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 ItHappenedToMePod@gmail.com. 

#28 Dry Eye with Dr. Esen Akpek

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 ItHappenedToMePod@gmail.com. 
 

#27 Prevention of Blindness Society

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 ItHappenedToMePod@gmail.com.

#26 Wolfram Syndrome Expertise from Dr. Fumihiko Urano

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 shurst@wustl.edu. 
 
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 ItHappenedToMePod@gmail.com.

#25 Pancreatic Cancer with Patient Advocate Leslie Waldman

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 overweight
Personal history of diabetes and
Family history of pancreatic cancer or pancreatitis
 
Like 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 ItHappenedToMePod@gmail.com.

#24 Neuro-Ophthalmic Disorders with Dr. Andrew Carey

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 ItHappenedToMePod@gmail.com. 
 

#23 Autoimmune Conditions with Dr. Colby Kash

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 ItHappenedToMePod@gmail.com. 

#22 Papillary Thyroid Cancer with Carly Flumer

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 ItHappenedToMePod@gmail.com. 
 

#21 Wolfram Syndrome with Parent Pat Gibilisco

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 ItHappenedToMePod@gmail.com.