Eos Support Webinar Series

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.

EoE Treatment Adherence: What We Have Learned

October 19, 2023 at 1:00 PM ET

APFED Webinar Featuring Dr. Mark HolbreichJoin us for a webinar featuring Mark Holbreich, MD, to learn about eosinophilic esophagitis (EoE) and treatment adherence. During this 60-minute webinar, Dr. Holbreich will discuss key findings from research on the effects of not adhering to treatment plans for EoE.

Register now

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.

 

Past Webinars

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 Hepatology Program Director
Medical Director, Eosinophilic Gastrointestinal Disease Clinic
Medical Director, Transnasal Endoscopy Program
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 Leader Fellow 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.

 

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

 

Apps

 

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
Associate Professor of Medicine, Division of Gastroenterology
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

 

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

 

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

 

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

 

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

Guest presenter 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

 

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

 

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

 

 

Thank you to our Education Partners for their support of this series:

 

abbott

AstraZeneca

 

Bristol Myers Squibb

GSK

Sanofi Regeneron