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 throughout the year.

 

Esophageal Dilation: Pros, Cons, and When to Use It

October 18, 2022 at 12:00 p.m. ET / 11:00 a.m. CT

Esophageal Dilation: Pros, Cons, and When to Use ItJoin Diana Snyder, MD, of Mayo Clinic Rochester, to learn about esophageal dilation and when this procedure might be considered for dysphagia. During this 60-minute webinar, she’ll share information about potential benefits and risks, and what to expect during the process. Register to learn more.

Register for webinar

 

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.

 


Past Webinars

 

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