APFED’s Eos Support Webinar Series offers a virtual forum for patients and families to connect and learn. Each webinar is 60 minutes (1 hour).
Upcoming Webinars
Stay tuned as we continue to add to our lineup of speakers and topics.
Relationship Between Acid Reflux and EoE in Children
January 15, 2025 at 12:00 PM ET
Join us for a webinar featuring Erin Syverson, MD. During this 60-minute webinar, Dr. Syverson will share information about acid reflux and eosinophilic esophagitis, how they are related, how they differ, and treatment options.
APFED is grateful to our Education Partners for supporting our webinar series: Bristol Myers Squibb, GSK, Sanofi, and Regeneron.
Featured Speaker
Erin P. Syverson, MD
Gastroenterologist
Boston Children’s Hospital
Dr. Erin Syverson earned her medical degree from Jefferson Medical College and completed her Pediatric Residency at Children’s National Medical Center, followed by a Pediatric Gastroenterology fellowship at Boston Children’s Hospital. She is an Assistant Professor of Pediatrics at Harvard Medical School, an Attending Physician in the division of Gastroenterology, Hepatology, and Nutrition, and serves as the Director of the Eosinophilic Gastrointestinal Disease Program at Boston Children’s Hospital, a program dedicated to providing multidisciplinary care to children with eosinophilic GI disorders (EGIDs). Dr. Syverson is passionate about advancing knowledge about pediatric EoE through research, medical education, and patient advocacy.
Past Webinars
EGIDs in Infants
December 2024
During this webinar, Girish Hiremath, MD, MPH, shared information about how eosinophilic esophagitis, eosinophilic colitis, and eosinophilic gastroenteritis present in infants, including how to differentiate these conditions from other problems with similar symptoms, and diagnostic and treatment considerations.
APFED is grateful to our Education Partners for supporting our webinar series: Bristol Myers Squibb, GSK, Sanofi, and Regeneron.
Featured Speaker
Girish Hiremath, MD, MPH
Pediatrician and Gastroenterologist
Vanderbilt University Medical Center
Dr. Girish Hiremath is a board-certified Pediatrician and Pediatric Gastroenterologist. He leads Vanderbilt’s multidisciplinary Pediatric Eosinophilic Gastrointestinal Disorders (EGIDs) Program, which focuses on providing exceptional clinical care to EGID patients and serves as a referral center for patients living in the Southern region. Through his interactions with EGID patients and their caregivers, he is able to identify the unmet needs that are most relevant to them, and this informs his translational research. Dr. Hiremath has been conducting eosinophilic esophagitis research for over 15 years and has made several significant contributions. He has authored/ co-authored over 75 peer-reviewed publications and has been invited to speak at international and national conferences. The NIH, Consortium of Eosinophilic Gastrointestinal Disease Researchers, American College of Gastroenterology, and institutional grants have supported his research. He works closely with patient advocacy groups, patient registries, and the pharmaceutical industry. His commitment to the field has been recognized through his nomination to the Society for Pediatric Research and numerous other awards and accolades.
Inflammatory Markers in Eosinophilic Gastritis
November 2024
During this webinar, Ashley Pyne, PhD, RDN, CNSC shared research findings about inflammatory markers in eosinophilic gastritis previously presented as a poster at Digestive Disease Week.
APFED is grateful to our Education Partners for supporting our webinar series: Bristol Myers Squibb, GSK, Sanofi, and Regeneron.
Featured Speaker
Ashley Pyne, PhD, RDN, CNSC
Dietitian-Researcher
University of Utah
Ashley Pyne, PhD, RDN, CNSC, is a dietitian-researcher involved in clinical laboratory work focused on Eosinophilic Gastrointestinal Disorders (EGID) at the University of Utah. Working closely with patients as a dietitian—most with immune-mediated gastrointestinal conditions —inspired her interest in the mechanisms of diet. As such, Dr. Pyne received her PhD in Nutrition and Integrative Physiology from the University of Utah. Her doctoral work focused on investigating food-specific antibodies and inflammatory markers in eosinophilic esophagitis (EoE). She received a USDA National Institute of Food and Agriculture grant to continue her research of food-specific antibodies in EoE. Dr. Pyne is passionate about understanding how diet affects inflammation in EGIDs and what markers or testing can be developed to manage the disease.
EoE Re-admissions to the Hospital
October 22, 2024 at 1:00 PM ET
During this webinar, Prateek Sharma, MD, shared information about trends and predictors of EoE re-admissions to the hospital.
APFED is grateful to our Education Partners for supporting our webinar series: Bristol Myers Squibb, GSK, Sanofi, and Regeneron.
Featured Speaker
Prateek Sharma, MD, FACG, FACP, FASGE
Internist, Gastroenterologist
University of Kansas Medical Center
Kansas City Veteran Affairs Medical Center
Prateek Sharma, MD, FACG, FACP, FASGE completed his internal medicine residency at the Medical College of Wisconsin in Milwaukee and his gastroenterology fellowship at the University of Arizona in Tucson. He is currently a Professor of Medicine and Program Director for the Gastroenterology fellowship program at the University of Kansas Medical Center, Kansas City, USA. He is also the Section Chief of Gastroenterology at the Kansas City Veteran Affairs Medical Center, Kansas City, USA.
Dr. Sharma has been at the forefront in improving the diagnosis and management of GI diseases and cancer, specifically in esophageal diseases, GERD, Barrett’s esophagus, advanced imaging, and endoscopic treatments. He is a world-renowned physician, teacher, and educator.
Dr. Sharma has been interviewed by the Wall Street Journal and Newsweek. He has over 400 publications, including original articles and book chapters, and has been invited to present at over 500 major national and international meetings. He’s also a reviewer and on the editorial board of the most leading gastroenterology journal and has been part of the development of key clinical guidelines for Barrett’s esophagus. In addition, he has published several important textbooks: Barrett’s esophagus and esophageal cancer; Rise of acid reflux in Asia; Gastrointestinal Cancers. Dr. Sharma has and continues to publish in several high-profile national and international journals, including the New England Journal of Medicine, Annals of Internal Medicine, Gastrointestinal Endoscopy, Gastroenterology, and the American Journal of Gastroenterology. He is a principal investigator and lead clinician on multiple clinical trials involving patients with Barrett’s esophagus, Gastroesophageal reflux disease, and Artificial intelligence. He is also the leader of Barrett’s esophagus study group; a global consortium of 7 academic institutions. He has developed a registry of patients with Barrett’s esophagus, dysplasia and cancer prospectively followed at each of these centers to study the natural history, health care utilization, and evaluate factors associated with progression.
Dr. Sharma is currently the President-elect of the American Society for Gastrointestinal Endoscopy. He was previously treasurer of the American Society for Gastrointestinal Endoscopy, as well as President of the International Society of Diseases of the Esophagus (ISDE). Dr. Sharma has hosted the global AI-GI-Endoscopy Summit twice and has been named as the chair of the American Society for Gastrointestinal Endoscopy (ASGE) task force on Artificial Intelligence.
Managing Persistent Cases of EoE
September 2024
During this webinar, Terri Brown-Whitehorn, MD shared information about managing persistent cases of eosinophilic esophagitis (EoE), including approaches to refractory EoE and long-term management/monitoring.
APFED is grateful to our Education Partners for supporting our webinar series: Bristol Myers Squibb, GSK, Sanofi, and Regeneron.
Featured Speaker
Terri Brown-Whitehorn, MD
Pediatric Allergist
Children’s Hospital of Philadelphia
Perelman School of Medicine at the University of Pennsylvania
Dr. Terri Brown Whitehorn is a Professor of Clinical Pediatrics at The Perelman School of Medicine at the University of Pennsylvania and Children’s Hospital of Philadelphia. She completed her medical training at the University of Missouri, Kansas City, post-doctoral research at St. Jude Children’s Research Hospital, and her pediatric residency and Allergy/Immunology fellowship at Children’s Hospital of Philadelphia. She is very active in the care of pediatric patients with all atopic conditions and over time has developed a special interest in IgE mediated food allergy, eosinophilic esophagitis, and food protein induced enterocolitis. She was one of the first allergists involved in the Center for Pediatric Eosinophilic Disorder clinic bringing patients, families, allergy, gastroenterology and nutrition together at the same time (since 2006!) and is the founder and director of the food protein induced enterocolitis center. She has participated in clinical research as a principle and sub-investigator for patients with IgE mediated food allergy, atopic dermatitis and eosinophilic esophagitis. Knowing first-hand the hard work and dedication of the patient/family and the clinical research teams has been eye-opening. Some of these studies have led to the FDA approval of therapies! She has co-written papers, spoken locally and nationally, and is very excited to participate in this webinar for APFED: Managing Persistent Cases of EoE.
Navigating Treatment Choice in EoE
August 2024
During this webinar, David Leiman, MD, MSHP, shareed information about treatment for eosinophilic esophagitis (EoE), including available treatment options, goals, and quality indicators.
APFED is grateful to our Education Partners for supporting our webinar series: GSK, Sanofi, and Regeneron.
Featured Speaker
David Leiman, MD
Gastroenterologist
Duke University Medical Center
David Leiman, MD, MSHP, is an Associate Professor of Medicine in the Division of Gastroenterology at Duke University Medical Center, where he is also a member of the Duke Clinical Research Institute. His clinical practice focuses on the evaluation and management of patients with complex esophageal and swallowing disorders, including eosinophilic esophagitis. Dr. Leiman is an active clinical and health services researcher focusing on care delivery. He currently runs several EoE clinical trials at Duke and has received both internal and extramural grant funding to study optimal care pathways aimed at improving practice quality and patient outcomes. He has authored multiple guidance documents on clinical best practices, including for EoE, and also serves as co-Director of the Esophageal Center at Duke.
Is Your EoE Under Control?
July 2024 | Special pre-conference webinar
During this webinar, Mirna Chehade, MD, MPH, shared information about eosinophilic esophagitis (EoE), including strategies for treatment and how to evaluate if it is under control.
We thank our EOS Connection 2024 Presenting Education Partners Sanofi and Regeneron, for independently providing support to APFED for this webinar.
Featured Speaker
Mirna Chehade, MD, MPH
Pediatric Gastroenterologist
Founding director of the Mount Sinai Center for Eosinophilic Disorders Icahn School of Medicine at Mount Sinai Dr. Mirna Chehade is Professor of Pediatrics and Medicine at the Icahn School of Medicine at Mount Sinai, New York, NY. She is the founding director of the Mount Sinai Center for Eosinophilic Disorders (MSCED). The Center provides cutting edge clinical care, research, and support for patients with eosinophilic gastrointestinal diseases (EGIDs) and their families, including eosinophilic esophagitis (EoE). Dr. Chehade has been repeatedly voted as a Castle Connolly top doctor in Pediatric Gastroenterology. She runs several clinical and translational research studies on EoE. She is also a site Principal Investigator in multi-center clinical trials on EoE, and a site principal investigator in the NIH-funded Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). Dr. Chehade has several publications on gastrointestinal food allergies and eosinophilic gastrointestinal disorders. She is an active member in national and international organizations, including AAAAI, EAACI, NASPGHAN and AGA. She also volunteers as a member of the medical advisory board of the American Partnership for Eosinophilic Disorders (APFED). Dr. Chehade is a frequently invited speaker at national and international meetings, and an invited reviewer for a number of gastroenterology and allergy journals.
EGPA: Tips for Self Management
June 2024
During this webinar, Juanita Mora, MD shared information about eosinophilic granulomatosis with polyangiitis (EGPA) including what it is, treatment goals, and tips for self-management.
We thank our Education Partners for supporting this webinar series: GSK, Sanofi, and Regeneron.
Featured Speaker
Juanita Mora, MD
Allergist and Immunologist
Chicago Allergy Center
Dr. Mora was born and raised in Chicago. She is the first of five children born to immigrant Mexican Parents. She expressed an interest in preventative care and medicine since an early age and really enjoys reaching out and mentoring in the underserved communities of Chicago. All her education was completed in Chicago- College at the University of Chicago where she graduated with a Chemistry major, Medical School at University of Illinois College of Medicine at Chicago, followed by a combined Residency Program in Internal Medicine and Pediatrics at Rush University Medical Center. She furthermore went on to do subspecialty training in Allergy and Immunology and completed her fellowship at Rush University Medical Center. Throughout her fellowship- she also completed a Masters in Clinical Research. Dr. Mora maintains her ties in academic medicine as an attending at Illinois Masonic Medical Center. She loves teaching medical students, residents and fellows and can often be found as an expert voice at medicine or pediatric morning report conferences. Dr. Mora volunteers her time going out into the Latino community and giving empowering talks to underserved high school students about pursuing their dreams. She also enjoys teaching parents and kids about asthma and food allergies. She serves as a board member for The Asthma Workforce as part of the Illinois Chapter of the American Academy of Pediatrics. Dr. Mora has received multiple awards throughout her career that include: Aesculapius Teaching Fellow of the Year Award presented by Rush University Medical School Class 2008, and Feinberg Research Award 2009 presented by the Illinois Society of Allergy, Asthma and Immunology. Dr. Mora’s special interests include: Food Allergies, Drug Allergies, Asthma, Atopic Dermatitis, Allergic Rhinitis, Eosinophilic Esophagitis and work-up of primary immune deficiencies. She has a special interest in education and preventative care of diseases in the area of allergy and immunology.
Managing Food Impactions
May 2024
During this webinar, Anthony Olive, MD, shared information about managing food impactions including what it is, why it happens, when to seek emergency care, and how to avoid it.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured Speaker
Anthony Olive, MD
Pediatric Gastroenterologist
Texas Children’s
Sleep Disturbances and EoE
March 2024
During this webinar, Reed A. Dimmitt, MD, shared information about sleep disturbances, pain, and EoE.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured Speaker
Reed A. Dimmitt, MD
Pediatric Gastroenterologist
Dothan Pediatric Subspeciality Clinic
Dr. Reed A. Dimmitt is a Pediatric Gastroenterologist licensed by the Alabama Board of Medical Examiners. He is certified in Pediatric Gastroenterology, Neonatal-Perinatal Medicine, and General Pediatrics by the American Board of Pediatrics. Dr. Dimmitt received his Doctor of Medicine degree from Saint Louis University School of Medicine, St. Louis, Missouri. He completed his Pediatric Residency Program at Lucile Packard Children’s Hospital at Stanford, Palo Alto, California. Following his Pediatric Residency, Dr. Dimmitt completed a three-year Neonatal-Perinatal/Developmental Medicine Fellowship at Stanford University School of Medicine, Stanford, California. Dr. Dimmitt joined the UAB Department of Pediatrics in 2001 as a neonatologist. Because of his clinical and research interests in pediatric gastrointestinal disease, he completed a second fellowship in Pediatric Gastroenterology, Hepatology, and Nutrition in 2009. He was appointed the Division Director of Pediatric Gastroenterology at UAB/Children’s of Alabama in 2010 and served in that capacity for 14 years. In January 2024, Dothan Pediatric Healthcare Network welcomed Dr. Dimmitt as a physician at Dothan Pediatric Subspecialty Clinic. Dr. Dimmitt’s clinical interests include all pediatric GI conditions with specific focus on abdominal pain, complex care, and eosinophilic diseases.
Psychological Skills for Living with Chronic Health Conditions
February 2024
During this webinar featuring Ashley Greenwell, PhD, HEC-C, she shared information about the role psychologists play in managing chronic medical conditions like eosinophilic disorders.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured Speaker
Ashley Greenwell, PhD, HEC-C
Greenwell Psychology & Consulting
Dr. Ashley Greenwell is a Psychologist and Certified Healthcare Ethics Consultant, who specializes in supporting individuals to reclaim their sense of vitality after facing chronic adversity, trauma, and medical challenges. She began her training with the National Center for PTSD and then studied with Mayo Clinic to more fully integrate the physical and psychological domains of well-being. Over the last 15 years, Ashley has developed specific expertise in GI psychology, chronic pain interventions, collaborating with medical providers to improve evidence-based treatment for those facing chronic health conditions and complex life stressors. She teaches at the University of Utah and is the founder of Greenwell Psychology & Consulting.
Resources
Building an EoE Care Team
December 2023
Watch this webinar recording featuring Rajitha D. Venkatesh, MD, MPH, FAAP, the Co-Director of the Eosinophilic GI Disorders Program at Nationwide Children’s Hospital, to learn tips for building an EoE care team, the types of specialists who work with people living with EoE, and the value of a multidisciplinary care team and shared decision making.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured Speaker
Rajitha D. Venkatesh, MD, MPH, FAAP
Nationwide Children’s Hospital
Rajitha D. Venkatesh, MD, MPH, FAAP, is an attending pediatric gastroenterologist at Nationwide Children’s Hospital and Co-Director of the Eosinophilic GI Disorders Program. She is also an assistant professor of Clinical Pediatrics at The Ohio State University College of Medicine. Dr. Venkatesh attended SUNY Upstate Medical University for medical school and was selected as a NIH Fogarty Clinical Scholar. She went on to complete residency training in Pediatrics at Yale-New Haven Children Hospital, and fellowship training in Gastroenterology, Hepatology & Nutrition at Massachusetts General Hospital for Children (MGHfC). She completed her MPH in population health at The OSU School of Public Health. Her clinical interests span all gastrointestinal disorders with a special interest in eosinophilic GI disorders including eosinophilic esophagitis. She is the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN) Eosinophilic GI Disorders (EGID) Special Interest Group Chair. Her interests include innovation in clinical care including transnasal endoscopy for eosinophilic esophagitis. In addition, she has an interest in population health, health care equity and improving access to care including through telemedicine. She serves on multiple national committees including the American Academy of Pediatrics (AAP) Button Battery Taskforce as well as the AAP Section on Telehealth Care. She also serves as the Social Media Editor for JPGN Reports, a peer-reviewed open access journal which is a joint publication of NASPGAN and ESPGHAN.
Tips for Transitioning From Pediatric to Adult Care
November 2023
During this webinar featuring Kristle Lynch, MD, from Penn Medicine, Dr. Lynch shared tips for transitioning from pediatric to adult care and discussed potential challenges.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured speaker
Kristle Lynch, MD
Penn Medicine
Kristle Lynch, MD, is an Associate Professor of Clinical Medicine and currently serves as the Director of the Esophageal and Swallowing Center of the University of Pennsylvania’s Perelman School of Medicine. She has been offered clinical grant funding by both the ACG and AGA which has furthered her research in rare diseases, specifically with a focus on Eosinophilic Esophagitis. She is the founder and program director of the Advanced Esophageal Fellowship and the Director of the GI Physiology laboratory. She serves on the North American FLIP Panometry working group and several AFS, ASGE, and AGA committees. Her clinical and research interests include eosinophilic esophagitis, esophageal motility disorders, and gastroesophageal reflux disease.
Navigating Employment With Chronic Medical Conditions
November 2023
During this webinar, Tom Stewart, MS, PA-C, JD, a Social Security Disability attorney and physician assistant, shared how to navigate the challenges of employment while living with a chronic medical condition.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured speaker
Tom Stewart, MS, PA-C, JD
Social Security Disability Attorney
Physician Assistant
Thomas Stewart is a physician assistant who has worked in neurology with patients who have chronic diseases for twenty years. For the last 15 of those years, he has also worked as a disability lawyer, helping people with chronic diseases access Social Security and private disability benefits. He is interested in helping people with chronic diseases understand the various definitions of disability and how to protect themselves in the event they lose the ability to work.
EoE Treatment Adherence: What We Have Learned
October 2023
During this webinar featuring Mark Holbreich, MD, we learned about eosinophilic esophagitis (EoE) and treatment adherence. Dr. Holbreich discussed key findings from research on the effects of not adhering to treatment plans for EoE.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured speaker
Mark Holbreich, MD
Allergist
Allergy and Asthma Consultants
Mark Holbreich, MD, is a Board Certified allergist practicing in Indianapolis. He completed a pediatric residency at The New York University School of Medicine. He then completed his Allergy Fellowship at National Jewish Health in Denver Colorado. Following Fellowship Dr. Holbreich was on the faculty of National Jewish Health while also practicing allergy with Kaiser Permanente in Denver. Dr. Holbreich began practicing allergy in Indianapolis in 1987. He sees both children and adults. However has a particular interest in the evaluation and management of children with complex allergic problems, especially food allergy. He received the Furlong Award from FARE for his community work with parent supports groups for food allergic children. He is a Fellow of the American Academy of Allergy Asthma and Immunology and The American College of Allergy, Asthma and Immunology. He is a Diplomat of The American Board of Allergy and Immunology. He is Vice Chair of the Allergy Section at St. Vincent. Dr. Holbreich has a number of research interests and publications. These include the effect of Amish lifestyle on allergy protection, eosinophilic esophagitis, and the early introduction of peanut into the diet of infants at risk for peanut allergy.
Diagnostic Tools for EoE: Esophageal String Test
September 2023
During this webinar, Shauna Schroeder, MD, MS, presented information about unsedated endoscopy and monitoring options for eosinophilic disorders, including the esophageal string test. Dr. Schroeder discussed the different types of diagnostic tools that are available, how they work, and when they are used, with a focus on the esophageal string test.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured speaker
Shauna Schroeder, MD, MS
Pediatric Gastroenterology
Phoenix Children’s Hospital
Dr. Shauna Schroeder has been practicing Pediatric Gastroenterology at Phoenix Children’s over the last decade. She is an assistant professor of pediatrics at the University of Arizona and Mayo Clinic. She started the Multidisciplinary Eosinophilic Gastrointestinal Disease Clinic and has interests in less invasive esophageal surveillance as director of trans-nasal endoscopy program and medical education as program director of the Pediatric GI/Hepatology Fellowship Program. She did her undergrad training at the University of Illinois Champaign and moved to Florida where she got her master’s in biomedical sciences at Florida Atlantic University. Her interest in Pediatric GI started as a Medical Student at the University of Miami Leonard School of Medicine and moved to the Yale Pediatric Residency program for further training. She completed her GI/Hepatology Training at Children’s Hospital Colorado and worked in Dr Furuta’s lab engaged in clinical-translational research.
Could It Be More Than Asthma?
July 2023
During this special webinar about eosinophilic asthma, Joanne Mitchell-McLaren, RN, BSN, MSN, NP, Patient Engagement Liaison for GSK, discussed subtypes of asthma, the impact asthma can have on your life, and goals for controlling asthma.
Thank you to GSK for supporting this webinar.
Featured speaker
Joanne Mitchell-McLaren, RN, BSN, MSN, NP
Patient Engagement Liaison (PEL)
GSK
Joanne Mitchell-McLaren, RN, BSN, MSN, NP, is a Patient Engagement Liaison (PEL) with GSK. She has worked for more than 40 years caring for patients in the pediatric, adults, and octogenarian areas, including the specialties of allergy and asthma, cardiology, dermatology, ENT (ears, nose, & throat), neurology, obstetrics and gynecology, psychiatry, pulmonary, and urology. Also, Joanne has worked for 23 years within the pharmaceutical industry supporting patients and their healthcare providers. Joanne obtained her first nursing license as a Licensed Practical Nurse (LPN) at the young age of 17 years old. She also holds a Bachelor of Science in Nursing from SUNY Brockport and a Master of Science in Nursing and Nurse Practitioner (NP) degrees from the University of Rochester School of Medicine and Dentistry. She has a strong passion for educating and advocating for patients and caregivers. Throughout her career, she has become a true Ambassador for those without a voice or who are often overlooked and lack access to health care, which has fueled a fire within her for years. Joanne has worked in unmet communities helping those who have little to no healthcare. She has also worked in local churches to change the lives of their congregants to live healthier lives. Joanne’s proudest accomplishments include being a mother to two beautiful children and a wife of 30 years to her wonderful husband. She believes the greatest gift one can provide to others is the gift of a servant. Her passion is advocating and empowering others, traveling, healthy living, reading, and sitting by any ocean. Also, having the honor to positively impact patients’ lives and potentially improve their quality of life through education and advocacy regardless of diagnosis, neighborhood one resides in or any other healthy disparity reason.
Accommodations in School
July 2023
Sharon-rose Gargula, MSN, RN, NCSN, presented information about accommodations in schools and eosinophilic disorders. During this 60-minute webinar, Sharon discussed the National Association of School Nurses’s position statement on 504 plans, and shared practical tips for developing a plan for students in need of educational accommodations.
We thank our Education Partners for supporting this webinar series: Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured speaker
Sharon-rose Gargula, MSN, RN, NCSN
Robert Wood Johnson & Johnson School Nurse
Share-rose Gargula, MSN, RN, NCSN, has been a school nurse for over 26 years. With a yearly enrollment of 760 students coming from Urban and Suburban communities, over 22% of the students she supports have either an IEP or 504 accommodations in place. Working closely with other support staff, she advocates for students with healthcare needs ensuring that supports, needed to be successful alongside their peers are put in place. She recently spoke at the Delaware Epilepsy Conference on What Parents Need to Know in the School Community and presented at the 3rd Annual Virtual Diabetes Symposium explaining the difference between IEP and 504 accommodations.
EoE & Inflammation: How EoE Works
June 2023
During this special pre-conference webinar featuring Nathalie Nguyen, MD, she discussed eosinophilic esophagitis (EoE) and inflammation, including the role eosinophils play in the body, how EoE works, and more.
Thank you to Sanofi and Regeneron, our Presenting Level Education Partners for EOS Connection 2023, for their support of this webinar. To register for the conference, visit apfed.org/conference.
Featured speaker
Nathalie Nguyen, MD
Gastroenterologist
Children’s Hospital of Colorado
Dr. Nathalie Nguyen is a pediatric gastroenterologist at the Children’s Hospital of Colorado. She received her undergraduate degree from the University of Texas and medical degree from Texas A&M College of Medicine. She completed her pediatric internship and residency at UT Southwestern Medical Center in Dallas, Texas. She completed her Pediatric Gastroenterology, Hepatology & Nutrition fellowship at the University of Colorado/ Children’s Hospital of Colorado where her research focused on the role of the epithelial barrier in eosinophilic esophagitis. Dr. Nguyen is an Assistant Professor of Pediatrics and Pediatric Gastroenterologist at the Children’s Hospital of Colorado in the Gastrointestinal Eosinophilic Disease Program (GEDP) with the hope of improving the lives of children with eosinophilic GI disease by providing individualized, multi-disciplinary care. Her research and clinical interests are in eosinophilic gastrointestinal disease, including eosinophilic esophagitis and innovative methods for disease monitoring, including transnasal endoscopy. Transnasal endoscopy is where we are able to do endoscopy without general anesthesia in children.
Diagnostic Tools and Eosinophilic Disorders Focus on transnasal endoscopy
May 2023
During National Eosinophil Awareness Week 2023, we held a special webinar featuring Diana Lerner, MD, Paul Menard-Katcher, MD, and Eitan Rubinstein, MD. The group discussed different types of diagnostic tools that are available for eosinophilic esophagitis, how they work, when they are used, and more. This panel discussion focused on unsedated transnasal endoscopy. We will hold another webinar that focuses on the esophageal string test for EoE in September 2023.
- Watch on YouTube
- View Dr. Lerner’s slides
- View Dr. Menard-Katcher’s slides
- View Dr. Rubinstein’s slides
Featured speakers
Diana Lerner, MD
Children’s Wisconsin
Diana Lerner is an Associate Professor of Pediatric Gastroenterology at Children’s Wisconsin, Medical College of Wisconsin in Milwaukee. She specializes in diseases of the esophagus including Eosinophilic Esophagitis, Esophageal Atresia, Aerodigestive Medicine, and Therapeutic Endoscopy. Dr. Lerner served as the Chair of the NASPGHAN Endoscopy and Procedures Committee and is currently the Director of Endoscopy and Co-Director of the Aerodigestive Program. Children’s Wisconsin has a robust EOE program with more than 400 unique pediatric patients. The program offers both sedated and un-sedated trans-nasal endoscopy.
Paul Menard-Katcher, MD
University of Colorado School of Medicine
Paul Menard-Katcher is an associate professor of medicine in the division of Gastroenterology at the University of Colorado School of Medicine – Anschutz Medical Campus. He clinical interests are in esophageal diseases including Eosinophilic Esophagitis. He is part of the Consortium of Eosinophilic Gastrointestinal Diseases Researchers (CEGIR), a group of Eosinophilic GI disease experts dedicated to improving the lives of individuals with eosinophilic gastrointestinal disorders. He also serves on the Medical Advisory Board of EvoEndo.
Eitan Rubinstein, MD
Boston Children’s Hospital
Dr. Eitan Rubinstein completed his medical school training at the University of Southern California Keck School of Medicine. He then completed his pediatric residence at the Boston Combined Residency Program at Harvard University and Boston University. Following residency, he earned his degree in pediatric gastroenterology at the University of California, San Diego. Dr. Rubinstein currently practices as an attending physician in the department of gastroenterology and nutrition at Boston Children’s Hospital and is an assistant professor in pediatrics at Harvard Medical School. He is the director of the transnasal endoscopy program and the gastroenterology consult service. He specializes in allergic gastrointestinal and aerodigestive disorders.
Biologics at Large
May 2023
Amy Klion, MD, presented information about biologics and how they are used to treat eosinophilic disorders. During this webinar, she discussed the science behind biologics, how targeted therapies work, and more.
We thank our Education Partners for their support of this webinar: AstraZeneca, Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured speaker
Amy Klion, MD
National Institute of Health
Dr. Klion is a Senior Clinical Investigator and Head of the Human Eosinophil Section in the Laboratory of Parasitic Diseases at the National Institutes of Health (NIH). Her research program includes basic and translational research related to the role of the eosinophil and eosinophil activation in disease pathogenesis. The ultimate goal of her laboratory is to develop novel diagnostic tools and treatment approaches for hypereosinophilic syndromes (HES) and other conditions associated with marked eosinophilia, including helminth infection. Dr. Klion is past president of the International Eosinophil Society and recipient of the society’s 2015 service award. She has served on the editorial boards of Blood and the Journal of Allergy and Clinical Immunology and numerous advisory committees and expert panels related to her work on eosinophilic disorders and neglected tropical diseases. She is the author of more than 150scholarly articles, reviews, and textbook chapters
Microbiome and Eosinophilic Esophagitis
April 2023
Amiko Uchida, MD, presented information about the microbiome and eosinophilic esophagitis (EoE). During this 60-minute webinar, she shared what is known and future directions that are important.
We thank our Education Partners for their support of this webinar: AstraZeneca, Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured Speaker
Amiko Uchida, MD
University of Utah School of Medicine
Amiko Uchida, MD is a gastroenterologist at the University of Utah School of Medicine and specializes in caring for and conducting research focused on patients with immune disorders of the GI tract, such as eosinophilic GI disease (EGID) and inflammatory bowel diseases (IBD). She has particular interest and expertise in the increasingly common, yet poorly understood disease eosinophilic esophagitis (EoE), as well as other EGIDs. She is the Co-Director of the University of Utah Multidisciplinary Eosinophilic Gastrointestinal Disease Clinic and is a member of the Consortium for Eosinophilic Gastrointestinal Disease Researchers (CEGIR). Dr. Uchida is interested in signaling mechanisms of EoE disease pathology, the microbiota, and therapeutic options for patients suffering from the disease. More specifically, her research program encompasses better defining how diet and the microbiome affect inflammation in EoE and what non-invasive markers or testing can be performed to manage the disease.
Creative Cooking with Eosinophilic Disorders
March 2023
Alexia Beauregard, MS, RDN, CSP, LD, presented information about creative cooking strategies for living with eosinophilic disorders. During this 60-minute webinar, she shared information about how to substitute foods on a limited diet, as well as tips for reading ingredient labels.
We thank our Education Partners for their support of this webinar: AstraZeneca, Bristol Myers Squibb™, GSK, Sanofi, and Regeneron.
Featured Speaker
Alexia Beauregard, MS, RDN, CSP, LD
Winn Community Hospital
Alexia Beauregard is the Chief of Clinical Dietetics at Winn Community Hospital on Fort Stewart, Georgia. She is a faculty member of the Ellyn Satter Institute and sits on the medical advisory board of the FPIES Foundation. She is actively involved in several other professional organizations with a focus on food allergy management education on food allergy. She helps her clients advocate for themselves, find as many safe foods as possible, and overcome food phobias. Alexia’s main goal for her clients is to help them find joy in food and thereby improve their quality of life. She firmly believes that food should not hurt or generate anxiety and that meal times can be a relaxing part of the day. When not working, Alexia enjoys spending time with her husband, 3 children, and 2 dogs on the beaches of South Carolina and Georgia.
Taking Care of Mental Health with Eosinophilic Disorders
February 2023
Margo Szabo, PhD, of Children’s Hospital of Philadelphia, shared information about the importance of mental health with eosinophilic disorders. During this 60-minute webinar, she shared information about what you can do for yourself and the people you care for, when to consider seeking help, and how to find services.
Featured Speaker
Margo Szabo, PhD
Pediatric Psychologist
Children’s Hospital of Philadelphia
Margo Szabo, PhD, is a Clinical Psychologist within the Department of Child and Adolescent Psychiatry and Behavioral Sciences and the Division of Gastroenterology, Hepatology, and Nutrition at the Children’s Hospital of Philadelphia. She also holds a faculty appointment as an Assistant Professor of Clinical Psychiatry at the University of Pennsylvania Perelman School of Medicine. She earned her doctoral degree from West Virginia University with an emphasis in clinical child psychology. Dr. Szabo completed her residency and fellowship training in pediatric psychology at the Kennedy Krieger Institute and Johns Hopkins School of Medicine. Her clinical interests involve working with children who have chronic medical conditions to address comorbid anxiety and mood symptoms, provide behavioral pain management, and improve adherence to medical regimens. Dr. Szabo has been working with the Center for Pediatric Eosinophilic Disorders at the Children’s Hospital of Philadelphia to expand psychosocial services to patients and families with eosinophilic esophagitis over the past few years.
Resources Shared During the Webinar
Websites
- anxietycanada.com
- copingclub.com
- chop.edu/centers-programs/child-life-education-and-creative-arts-therapy/health-resource
- apfed.org/webinar-series-zahka/
- APFED: Find Support Groups
Apps
- Relaxation/meditation/stress reduction
- Headspace
- Calm
- Breathe2Relax: Apple Store and Google Play Store
- Smiling Mind
- Therapy/coping tools
- Mindshift: Apple Store and Google Play Store
- Sanvello (formerly Pacifica)
- Virtual Hope Box: Apple Store and Google Play Store
- Other
- My Med Schedule: Apple Store and Google Play Store
- iReward Chart
- iEatOut: Apple Store
Natural History of Pediatric-Onset Eosinophilic Gastritis
December 2022
Vincent Mukkada, MD, of Cincinnati Children’s, presented information about the natural history of pediatric-onset eosinophilic gastritis. During this 60-minute webinar, he shared information about what we know about the natural history, where the gaps are, and what research is currently looking at for eosinophilic gastritis.
Featured Speaker
Vincent Mukkada, MD
Pediatric Gastroenterologist
Cincinnati Children’s Hospital Medical Center
Dr. Vincent Mukkada is a Professor of Pediatrics at the University of Cincinnati and Cincinnati Children’s Hospital Medical Center. He is also the Medical Director of the GI Lumen Inpatient Unit, Medical Director of the inpatient floor, and interim Medical Director for the Division of Gastroenterology, Hepatology, and Nutrition. His clinical areas of focus are eosinophilic disease and pediatric feeding disorders. He has been an author on more than 60 manuscripts.
Oral Immunotherapy and EoE
December 2022
Punita Ponda, MD, of Northwell Health, presented about oral immunotherapy and eosinophilic esophagitis (EoE). During this 60-minute webinar, she shared information about what oral immunotherapy is, when to consider it, and how it can play a role in EoE.
Featured Speaker
Punita Ponda, MD
Pediatric Allergist and Immunologist
Northwell Health
Dr. Punita Ponda started and is the founder and director of the Food Allergy Center at the Northwell Health System and Associate Division Chief and Assistant Fellowship Training Program Director in the Division of Allergy and Immunology. Dr. Ponda is an Associate Professor of Medicine and Pediatrics at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and is a very active clinician, educator, and researcher in addition to her administrative responsibilities. Dr. Ponda’s personal research interests are in the study of tolerance to food and aeroallergens in general, and more specifically to the human microbiome as it relates to the induction of tolerance in both IgE-mediated food allergy and Eosinophilic Esophagitis.
Artificial Intelligence in Eosinophil Disease Research
November 2022
Puanani Hopson, DO, of Mayo Clinic Rochester, presented about artificial intelligence (AI) in eosinophil disease research. During this 60-minute webinar, she shared information about how AI has been used in the past and how it is currently being utilized.
Featured speaker
Puanani Hopson, DO
Pediatric Gastroenterologist
Mayo Clinic Rochester
Dr. Puanani Hopson is a Pediatric Gastroenterologist at Mayo Clinic in Rochester, MN. She completed her GI fellowship training at the University of Florida in Orlando and prior to that was in her hometown of Honolulu where she attended Pediatric Residency at the University of Hawaii. She has research and clinical expertise in aerodigestive and esophageal disorders specifically eosinophilic esophagitis and gastroesophageal reflux disease. Some of her research at Mayo Clinic has included development and validation of artificial intelligence model for evaluating esophageal biopsies for patients with EoE.
Esophageal Dilation: Pros, Cons, and When to Use It
October 2022
Diana Snyder, MD, of Mayo Clinic Rochester, presented information about esophageal dilation and when this procedure might be considered for dysphagia. During this webinar, she shared information about potential benefits and risks, and what to expect during the process.
Featured Speaker
Diana L. Snyder, M.D.
Assistant Professor of Medicine
Mayo Clinic Rochester
Dr. Snyder is an Assistant Professor of Medicine at Mayo Clinic Rochester. She attended medical school at Loyola University Stritch School of Medicine in Illinois and matched at Loyola for Internal Medicine Residency. She was chosen to serve as Chief Internal Medicine Resident. Dr. Snyder completed Gastroenterology Fellowship at Mayo Clinic Arizona where she was selected as Chief Fellow as well as the first Advanced Esophageal Disorders Fellow completing her training in 2021. Her research is focused on esophageal disorders including eosinophilic esophagitis and motility disorders. She is currently running clinical trials in eosinophilic esophagitis at Mayo Clinic.
EoE: Common Questions Nurses Hear
September 2022
Asking questions at medical appointments is important. Stephanie Skirka, BSN, RN, CPN, of Children’s Hospital Colorado, joined APFED for a webinar about common questions nurses hear about EoE. She shared answers to these questions, plus answered more questions live. Watch the recording to learn more.
Featured Speaker
Stephanie Skirka, BSN, RN, CPN
Program Coordinator for Gastrointestinal Eosinophilic Disease Program (GEDP) Digestive Health Institute
Children’s Hospital Colorado
Stephanie Skirka, RN, BSN, CPN, is a program coordinator and clinical nurse at Children’s Hospital Colorado in The Gastrointestinal Eosinophilic Diseases Program. She has more than 25 years of nursing experience and expertise in GI medicine and eosinophilic diseases. She has a passion for educating patients and families on how to navigate chronic illness while maintaining quality of life.
South of the Esophagus: Characterizing Eosinophilic Gastrointestinal Diseases (EGIDs)
August 2022
Adult gastroenterologist and EGID expert, Nirmala Gonsalves, MD, of Northwestern University, joined us to speak about the new nomenclature for EGIDs. She discussed how the new nomenclature could impact research and clinical care.
Featured Speaker
Nirmala Gonsalves, MD
Gastroenterologist
Northwestern University Feinberg School of Medicine
Dr. Gonsalves is a Professor of Medicine in the Division of Gastroenterology & Hepatology at Northwestern University Feinberg School of Medicine and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. She completed her undergraduate training at the University of Notre Dame, medical school at Robert Wood Johnson Medical School in New Jersey and her internship, residency and fellowship at Northwestern where she has stayed on as an attending physician since 2005. In this role, she has co-authored more than 60 manuscripts and presented at more than 40 national or international meetings that focus on eosinophilic gastrointestinal diseases (EGIDs). Her research and clinical career is dedicated to improving the care of patients with these rare disorders. Her extensive clinical experiences with EGIDs have shaped the overarching research goals that include identifying novel treatments and determining the best methods to measure disease activity. She is a site investigator for the NIH funded U54 Grant Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, PI-Rothenberg) and Core Lead for the Northwestern Biorepository for an NIH sponsored PPG Grant on Esophageal Biomechanics (PI-Pandolfino).
Resources Shared During the Webinar
Genetics of EoE: What Is the Connection?
August 2022
Leah Kottyan, PhD, an Associate Professor at Cincinnati Children’s Hospital, discussed studies focused on the genetic etiology of eosinophilic esophagitis (EoE).
Featured Speaker
Leah Kottyan, PhD
Associate Professor
Cincinnati Children’s Hospital
Leah Kottyan, PhD, is an Associate Professor at Cincinnati Children’s Hospital. Understanding the genetic etiology of eosinophilic esophagitis and other eosinophilic gastrointestinal diseases is a major focus of her laboratory.
Chronic Nature of EGIDs
May 2022
Eosinophilic gastrointestinal disorders (EGIDs), including eosinophilic esophagitis (EoE), are chronic conditions, meaning symptoms might be ongoing and need routine care. While they can usually be controlled there is no cure. So how do you determine the best course of treatment? And what happens when you don’t treat the condition? Join us for a 60-minute webinar with Carla Davis, MD, Professor of Pediatrics and Chief of the Division of Immunology, Allergy, and Retrovirology in the Department of Pediatrics at Baylor College of Medicine, as well as Director of the Texas Children’s Hospital Food Allergy Program. She will share information about the chronic nature of EGIDs, and factors that influence treatment decisions. Register to learn more.
Featured Speaker
Carla Davis, MD
Allergist/Immunologist
Baylor College of Medicine and Texas Children’s Hospital
Dr. Carla M. Davis is a Professor of Pediatrics and Chief of the Division of Immunology, Allergy, and Retrovirology in the Department of Pediatrics at Baylor College of Medicine, as well as Director of the Texas Children’s Hospital Food Allergy Program. She is the principal investigator of over 20 epidemiological studies and clinical trials in food allergic disease and has mentored several pre and post-doctoral trainees in the past 15 years. As the Director of the Texas Children’s Hospital Food Allergy Program, she has developed an expertise in translational research studies for assessment of clinical tolerance to food allergic disease and the identification of clinical biomarkers. The goal of her research is to improve the quality of life of food allergic children through advancement in clinical diagnostic approaches and therapies for food allergy-related diseases, including peanut, milk, tree nut and shrimp allergy, and eosinophilic gastrointestinal diseases. As a clinician-scientist, she is committed to finding clinical correlates of active disease and predictors of successful therapy. She is also passionate about community education and diversity initiatives. She also enjoys serving as the President of the Texas Allergy, Asthma and Immunology Society and on the American Academy of Allergy, Asthma, and Immunology (AAAAI) Board of Directors. She also serves on the Editorial Board for the Journal of Allergy Clinical Immunology In Practice. She is passionate about serving as a role model and supportive mentor to others balancing work and family.
Grassroots Advocacy: Engaging Lawmakers to Advance Legislation
May 2022
Did you know that your experiences with eosinophil-associated disorders can help inform policymakers’ decisions? Megan Gordon Don presented information to help us learn how you can connect and interact with lawmakers and why patient and caregiver perspectives are so critical for them to hear. She shared information about how a bill becomes a law, how your experiences can help educate members of congress about unmet needs, and more.
Featured Speaker
Megan Gordon Don
President & CEO
MGD Strategies LLC
Megan Gordon Don, President and Founder of MGD Strategies, has extensive grassroots advocacy experience, leading strategic planning, developing successful programs and legislative campaigns, managing coalitions, and working with public health policy communities. Grassroots engagement and training has been a key area of focus during Gordon Don’s career. She was the head of the Pancreatic Cancer Action Network’s (PanCAN) Government Affairs & Advocacy Office for more than a decade. Her previous experience also includes working as the American Cancer Society’s lead federal lobbyist on health insurance and drug development issues, a congressional healthcare legislative aide, the Director of Socioeconomics and Quality Management for the Dallas County Medical Society and as a healthcare industry analyst for Andersen Consulting (now known as Accenture). Gordon Don established the Deadliest Cancers Coalition in 2008 and continues to serve as its Executive Director. She has also served on the Steering Committee and as the Treasurer of the One Voice Against Cancer (OVAC) coalition since 2006 and has served on the board of directors for United for Medical Research (UMR) and as the Government Relations Affinity Group (GRAG) Chair for the National Health Council. Gordon Don received her BA in modern European studies from Smith College and her MHS in health policy & management from Johns Hopkins University.
Healing the Leaky Pipe: Esophageal Barrier Dysfunction in EoE
March 2022
Esophageal barrier dysfunction can play a role in eosinophilic esophagitis (EoE). Targeting the esophageal barrier, in addition to inflammation, could be a way forward in treating this disease. Joanne Masterson, PhD, an Associate Professor at Maynooth University, shared information about translational research of esophageal barrier dysfunction.
Featured Speaker
Joanne C. Masterson, PhD
Associate Professor, National University of Ireland, Maynooth, Ireland
Adjunct Assistant Professor, University of Colorado, Department of Pediatrics, USA
Joanne’s expertise is in the area of epithelial and stem cell biology and she has spent nearly two decades researching Eosinophilic Gastrointestinal Diseases (EGIDs). After obtaining her BSc and PhD degrees in Ireland, Joanne moved to the USA in 2008 to complete postdoctoral fellowship training with Prof. Glenn Furuta in the Gastrointestinal Eosinophilic Diseases Program (GEDP) at the University of Colorado School of Medicine and the Children’s Hospital Colorado. Joanne joined the faculty at the University of Colorado School of Medicine in 2011 and her work has been extensively funded by fellowships and career development awards from the Crohn’s & Colitis Foundation of America (CCFA), the American Partnership for Eosinophilic Diseases (APFED) Hope on the Horizon Award, North American Society for Pediatric Gastroenterology Hepatology & Nutrition (NASPGGHN), and the National Institutes of Health (NIDDK). She returned to Ireland (2018) where she is now the Group Leader of the Allergy, Inflammation, and Remodelling Research (AIRR) lab at Maynooth University. Her research laboratory investigates the impact of allergic inflammation on the function of the esophageal epithelial barrier and associated stem cell niche. This work is focused on finding new and innovative ways to treat patients with EGIDs, with a particular focus on eosinophilic esophagitis (EoE).
Music Therapy for Chronic Disease
February 2022
There are benefits to both playing and listening to music. Watch this webinar to learn about the role of music therapy in rare and chronic conditions, such as eosinophilic disorders. Kerry Devlin, MMT, MT-BC, a senior music therapist at the Johns Hopkins Center for Music & Medicine, will share information about what music therapy entails, how it can help with chronic illness, and how to find programs.
Featured Speaker
Kerry Devlin, MMT, MT-BC
Music therapist
Johns Hopkins Center for Music and Medicine
Kerry Devlin, MMT, MT-BC (she/her) is senior music therapist at the Johns Hopkins Center for Music & Medicine. She has worked as a music therapist for more than seven years and is currently a Ph.D. researcher in the Doctoral Programme in Music Therapy at Aalborg University. As a disabled clinician, Kerry understands the unique experience of moving through the health care system as both a patient and a provider. She is passionate about disability justice and affirming the lived experience of therapy participants through co-constructed music experiences. Kerry is adjunct faculty at the Peabody Institute of The Johns Hopkins University and Shenandoah University, where she teaches courses centered on inclusive music education pedagogy, clinical music therapy practice, and telehealth approaches in music therapy. Her research has been published in Music Therapy Perspectives and Current Neurology and Neuroscience Reports, and she has created sought-after professional development courses centered on anti-oppressive early childhood music approaches and telehealth tools for music therapists. Kerry also holds a certification in neurologic music therapy.
Resources Shared During the Webinar
- Johns Hopkins Center for Music & Medicine
- American Music Therapy Association: Find a music therapist directory
- Certification Board for Music Therapists: Find a therapist
- Cove App
Palliative Care for Chronic Disease
January 2022
Dr. Andy Esch, senior education advisor at the Center to Advance Palliative Care, joined us for a webinar to help participants learn about palliative care for chronic diseases such as eosinophil-associated disease. He defined what palliative care is and who can benefit, discussed how and when palliative care can help people living with chronic disease, and shared how to get further information.
Featured Speaker
Andrew E. Esch, MD, MBA
Center to Advance Palliative Care
Dr. Esch is a senior education advisor at the Center to Advance Palliative Care. A palliative care specialist, Dr. Esch focuses on improving quality of life for patients and families living with serious illness. Dr. Esch earned his medical degree from the University of Buffalo.
Resources Shared During the Webinar
- GetPalliativeCare.org: A website providing clear, comprehensive palliative care information for people living with a serious illness
- Is Palliative Care Right For You?: An interactive quiz to assist in deciding whether palliative care may be right for you or your loved one
- Eosinophil-Associated Disease and Palliative Care: Specific information about how palliative care can help patients and loved ones with EAD
- Palliative Care Provider Directory: A web-based resource to help patients and their loved ones locate palliative care in their area
Navigating Insurance With Chronic Conditions
January 2022
Navigating insurance can be a challenge, particularly with chronic illnesses that require lots of doctors visits, procedures, treatments, and supplies. Elizabeth Johnson, LPN, Chief Executive Officer for MedicoCX and Co-founder and President of the National Association of Medication Access and Patient Advocacy (NAMAPA), will join us to share tips for working with insurance companies. This will include a discussion about how to access biologics and investigational treatments, as well as options when you can’t afford treatments.
Featured Speaker
Elizabeth Johnson, LPN, CPC, PACS, BCPA
Chief Executive Officer, MedicoCX
Co-founder and the President, National Association of Medication Access and Patient Advocacy (NAMAPA)
Elizabeth started her career in allergy and immunology and fell in love with the challenge of specialty medication access. Currently she is the Chief Executive Officer for MedicoCX, a group of independent specialists unified by patient centric access to biologics in a timely and cost effective manner, as well as a co-founder and the President of NAMAPA. Elizabeth is a Licensed Practical Nurse (LPN) with a rich background in patient care and holds multiple certifications: Certified Professional Coder (CPC), Prior Authorization Certified Specialist (PACS), and Board Certified Patient Advocate (BCPA). These exemplify her knowledge of some of the most integral parts of medication access and the healthcare spectrum.
Resources Shared During the Webinar
- National Association of Medication Access and Patient Advocacy
- Greater National Advocates
- National Association of Healthcare Advocacy
- State Health Insurance Assistance Programs (SHIP)
Self-advocacy in the Healthcare System
December 2021
Have you ever had trouble communicating with a healthcare provider? In this webinar, Founder of Healing Hugs Haven, Patti DeMuri shared how to set the focus of your appointment on your goals and desired outcomes so that you can better work with your doctor to get the right care for you.
Featured speaker
Patti DeMuri
Founder, Healing Hugs
Haven Patti is passionate about helping rare, complex, and chronic disease patients gain the skills and confidence to navigate the medical system and work with their doctors to get the care they need. She is the founder of Healing Hugs Haven which helps patients learn how to advocate for themselves through teaching, mentoring, and coaching in classes and an ongoing membership. Patti is the mom to three adult children, two of whom were diagnosed with EoE and multiple other rare diseases since 2007. She is a rare disease patient advocate, retired medical mom, certified patient navigator care coordinator, and certified ACPI Parenting/Family Coach. With 20+ years in the biotech field (molecular biology/genome analysis software) and a past 25 year marriage to a pediatrician, Patti brings a wealth of knowledge and experience to families dealing with rare and chronic illnesses.
Resources Shared During the Webinar
- Healing Hugs Haven
- Healing Hugs Haven Facebook Page
- Healing Rare Disease Health Care Facebook Group
- Clarifying Your Goals Worksheet
Improving Treatment Adherence in Teens
December 2021
Sticking to a prescribed treatment routine can be a challenge for adolescents. Dr. Pooja Mehta of Children’s Hospital Colorado will join us to discuss common factors that impact treatment adherence and potential outcomes of non-treatment or intermittent treatment of eosinophilic esophagitis (EoE). She will also share strategies families can employ to support teens and young adults as they begin to take on more responsibilities for their own health care.
Featured speaker
Pooja Mehta, MD, MSCS
Pediatric gastroenterologist
Children’s Colorado
Dr. Mehta is a pediatric gastroenterologist at Children’s Hospital Colorado. Her clinical and research interests include finding innovative methods of improving treatment adherence in adolescents and young adults with eosinophilic esophagitis (EoE). Specifically, she is interested in the application of health psychology and in the use of digital health tools to reach patients outside of the traditional clinical setting. Her goals are to perform multidisciplinary and pragmatic research with patient input to improve outcomes in EoE.
Resources Shared During the Webinar
Coping With Upcoming Holiday Stress
November 2021
Having a chronic illness that causes pain, fatigue, or requires strict dietary changes can make fall and winter holidays hard to cope with. Speaker, coach, and trauma support specialist Aleasa Word will join us to discuss common end-of-year stress inducers, and share tips and strategies to help minimize both expected and unexpected stressors in today’s ever-changing climate.
Featured speaker
Aleasa Word
Certified Emotional Intelligence Practitioner Assessor, Equity and Inclusion Strategist, and speaker
Aleasa Word is a Certified Emotional Intelligence Practitioner Assessor, Equity and Inclusion Strategist, and speaker. Additionally, as a Certified Emotional Intelligence coach, she utilizes varied modalities to support those looking for mindset transformation, intrapersonal and interpersonal skill development, self-care, and confidence goals. She also works with individuals and groups desiring growth in cultural dexterity abilities across multiple industries to improve both personal and professional performance and life satisfaction outcomes. She is passionate about advocacy for the food allergic, eosinophilic and asthmatic communities. Aleasa earned a Bachelor of Science in Organizational Dynamics with minors in Emotional Intelligence & Leadership, Conflict Resolution, and Trauma-Informed Approaches from Wilmington University.
Increasing Volume and Variety During Mealtime
October 2021
Speech language pathologist Holly Knotowicz, MS, CCC-SLP provided mealtime tips for families of patients with EGID. She addressed struggles while eating and concerns about children not getting enough nutrition as the result of symptoms from EGID and/or limited food choices due to an elimination diet.
Featured speaker
Holly Knotowicz, MS, CCC-SLP
Speech-Language Pathologist Feeding and Swallowing Specialist
Picky Eaters Anonymous
Holly Knotowicz holds a Master of Science degree in Communication Sciences and Disorders from Nazareth College. She is a Speech Language Pathologist and a Feeding and Swallowing specialist with more than 10 years of experience. Her areas of clinical interest include behavioral, oral motor, and oral sensory feeding disorders, including mealtime dynamics. She specializes in working with children who have eosinophilic gastrointestinal diseases, including eosinophilic esophagitis and working with children who have food allergies, FPIES, and neurogenic disorders. She is an active participant in research, has been published in Gastroenterology Journal and is an international speaker on feeding.
Resources Shared During the Webinar
Hypervigilance and Anxiety in EoE Patients
October 2021
Psychologist Tiffany Taft will join us to discuss findings from her research that looked at measuring symptom anxiety and hypervigilance in those who have EoE. She will also discuss her efforts to research treatments to target these issues to help those with esophageal diseases better cope with chronic symptoms. During this webinar, you will learn how symptom anxiety and hypervigilance can be measured, and some steps you can take if you or a loved one are experiencing these feelings.
Featured speaker
Tiffany Taft, PsyD
Clinical Psychologist and Associate Professor
Northwestern University’s Feinberg School of Medicine
Dr. Taft is a clinical psychologist and Associate Professor at Northwestern University Feinberg School of Medicine where she researches the social and emotional impacts of chronic digestive diseases. She has specific interest in the impacts of EGIDs and other esophageal conditions, as well as developing brief, accessible treatments for those patients who need help coping with their illness. Dr. Taft created the now official measure of health-related quality of life for adults with EoE, and published the first studies on disease stigma in EGIDs. She currently focuses on the role of the brain-gut connection in esophageal diseases with the goals to improve symptoms and quality of life in patients with these conditions.
Resources Shared During the Webinar
Shared Decision Making in Health Care
September 2021
Joy Chang, MD, MS, discussed shared decision making in healthcare. She taught us the benefits of taking an active role in healthcare and working with providers to arrive at the best course for treatments. Watch this webinar to learn how to broach the subject of shared decision making with your doctor, as well as common areas of healthcare that lend themselves to shared decision making.
Featured speaker
Joy Chang, MD, MS
Gastroenterologist University of Michigan Health
Dr. Chang is an adult gastroenterologist at the University of Michigan whose clinical and research interests include improving the care, quality of life, and patient-provider communications for patients with eosinophilic esophagitis (EoE). During her training as a GI and advanced esophageal fellow, she developed an interest in how patients’ various preferences and values play into decisions about initiating and maintaining EoE treatment. Dr. Chang’s research focuses on shared decision making, health technology interventions in EoE care, and patient-centered collaborative research methods.
Resources Shared During the Webinar
- Critical Decisions by Peter A. Ubel, MD
- Dartmouth-Hitchcock Healthwise Health Encyclopedia
- Ottawa Personal Decision Guide
Taking the Lead in Your Healthcare: Tips for Teens & Young Adults
August 2021
Patient advocate, Ryan Piansky presented an informative, hour-long, webinar for teens and young adults about managing their own healthcare. Ryan shared his own journey and personal life experiences as well as answered questions at the end of the webinar.
Featured speaker
Ryan Piansky
Advocate
Ryan Piansky is a 21-year-old college student at the Georgia Institute of Technology. He has eosinophilic esophagitis as well as eosinophilic asthma and follows a restricted diet. Despite health issues, he leads an active life including travel, such as a semester abroad, and patient advocacy efforts. A long-time volunteer of APFED and supporter of the organization’s mission, Ryan has educated lawmakers on Capitol Hill about eosinophil-associated diseases and the unmet needs of the patients, has shaped educational programming, participates in research initiatives, and elevates awareness of these conditions.
Resources Shared During the Webinar
- Medicare and Medicaid Resources
- APFED Resources for Kids
- APFED Resources for Teens
- APFED Sample Health Information Sheet
- Glossary of Health Coverage and Medical Terms
Traveling with Dietary Restrictions, Tube Feedings, and Parenteral Nutrition
August 2021
Informative webinar presented by APFED’s President, Wendy Book, MD, focused on practical strategies for traveling with dietary restrictions. Dr. Book discussed the challenges of traveling with dietary restrictions, tube feedings, and parenteral nutrition. She shared common challenges and practical strategies she has personally employed over the years, as well solutions shared by others in our community. Watch the recording to gain new knowledge from someone who has “been there”!
Featured speaker
Wendy Book, MD
President, American Partnership for Eosinophilic Disorders
Dr. Book has been involved in a volunteer capacity on the executive board of APFED, serving as the board’s President since 2009. She has led education, advocacy, research, and awareness efforts leading to the creation of National Eosinophil Awareness Week, NIH report language, the NIH Task Force on the Research Needs of Eosinophil-Associated Diseases (TREAD) document, insurance coverage of medical foods, and development of ICD-9-CM codes for eosinophilic gastrointestinal diseases. She assisted in development of APFED’s HOPE on the Horizon Research Grant Program which provides funding to investigators. Her efforts have led to collaborations with other patient advocacy groups, physicians, medical societies, and federal agencies. Her experience as a parent of a chronically ill child, and as a physician, provides a unique perspective on the patient experience and challenges involved with managing eosinophil-associated disease.
Resources Shared During the Webinar
- APFED traveling resources
- FARE Traveling resources
- FARE Tips for international travel
- Oley Foundation travel tips
- Oley Foundation: Learning to travel with TPN
- Transportation Security Administration (TSA)
- Insuremytrip.com
Thank you to our Education Partners for their support of this series:
