Eos Support Webinar Series

APFED’s Eos Support Webinar Series offers a virtual forum for patients and families to connect and learn.

 


 

Upcoming Webinars

Stay tuned as we continue to add to our lineup of speakers and topics throughout the year.

 

 

Palliative Care for Chronic Disease

Palliative Care for Chronic DiseaseJanuary 25 at 1:00 PM ET

Join Dr. Andy Esch, senior education advisor at the Center to Advance Palliative Care, for a webinar to learn about palliative care for chronic disease such as eosinophil-associated disease. He will define what palliative care is and who can benefit, discuss how and when palliative care can help people living with chronic disease, and how to get further information. Register to learn more.

 

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.

 

 


 

Past Webinars

 

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 of 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:

 

AstraZeneca

 

Bristol Myers Squibb

 

Takeda