All posts by Amity Westcott-Chavez

American Partnership for Eosinophilic Disorders Welcomes New Member to Board of Directors

Announcements, APFED Blog, Press Releases, What's New

(Atlanta, GA) –The Board of Directors of the American Partnership for Eosinophilic Disorders (APFED) has announced the election of a new board officer, James DeLano.  Mr. DeLano brings to APFED his extensive experience in the development and implementation of policy and compliance strategy.

Mr. DeLano is a Senior Environmental Engineer with nearly 30 years of experience in stakeholder engagement, policy development and implementation, and project and operations management.

As the father of an adolescent who has chronic disease including eosinophilic esophagitis (EoE), Mr. DeLano understands firsthand the challenges that patients and their caregivers face, particularly when it comes to diagnostic delays, adequate disease management, and the impact the disease has on quality of life.

“For more than two decades, APFED has demonstrated an unwavering commitment to serving the needs of our patient community,” shared Mr. DeLano. “It is a privilege to serve as an advocate with this organization and to help shape and implement initiatives that can improve the lives of those with eosinophil-associated diseases.”

“APFED is thrilled to have the expertise that Mr. DeLano brings to our board,” said APFED President, Dr. Wendy Book. “The DeLano family has made significant contributions to eosinophil-disease community and has long advocated for patients and families living with these diseases. We look forward to working with James to carry out APFED’s mission as we educate, advocate, and advance research.”

Founded in 2001, APFED is a non-profit organization dedicated to patients and their families coping with eosinophil-associated diseases. Eosinophil-associated diseases are chronic inflammatory conditions characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific areas of the body. The higher-than-normal number of eosinophils cause inflammation and damage to tissues and organs. These chronic diseases require lifelong treatment and symptoms may be debilitating.

“It is a pleasure to welcome James DeLano to APFED’s Board of Directors,” said APFED Executive Director, Mary Jo Strobel. “His insights, perspectives, and vast firsthand knowledge of unmet needs in our community are truly assets to our organization and to the entire patient community. We are excited to have his guidance and leadership as APFED continues to grow and expand.”

To learn more about APFED and about eosinophil-associated diseases, visit www.apfed.org.

About the American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. https://apfed.org/

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Action Needed on Medical Nutrition Equity Act

Advocacy, APFED Blog, What's New

The Medical Nutrition Equity Act (MNEA, S2013/HR3783) would provide consistent, nationwide insurance coverage of medically necessary foods, such as elemental formula for treatment of eosinophilic gastrointestinal disorders.

How You Can Help This Legislation Pass:

  • Ask those who represent you in Congress to co-sponsor S2013/HR3783. A list of current co-sponsors is listed on nutritionequity.org/cosponsors/. There are tools on this website to help you find your representatives and send a request.
  • Call attention to the bill through social media using the hash tags #whynow4MNEA and #S2013HR3783. Examples of posts/tweets:

#whynow4MNEA? Many Americans who use elemental formula to treat EGID do not have this therapy covered by insurance. Proposed legislation will help ensure coverage for #medicalfoods. Calling on {{@tag your Congressional legislator here}} to support passage of #S2013HR3783!

#whynow4MNEA? Legislation that would provide insurance coverage of #medicalfoods would help my son, who relies on dietary therapy. Calling on {{@tag your Congressional legislator here}} to co-sponsor #S2013HR3783!

  • Share your experience with insurance coverage of medical foods on the website of the Patients and Providers for Medicial Nutrition Equity coalition.
  • Encourage family and friends to also ask members of Congress to co-sponsor and support passage of MNEA (S2013/HR3783).

Learn more about MNEA at nutritionequity.org.

Little Airways Big Voices

New Initiative Brings Voice of Families Impacted by Childhood Asthma to the Forefront of Drug Development

Announcements, APFED Blog, Media Info, Press Releases, What's New

FOR IMMEDIATE RELEASE

Four nonprofit organizations collaborate to bring “Little Airways, Big Voices” to the FDA

Washington, D.C. — September 15, 2021 — The Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America are collaborating on a new initiative — Little Airways, Big Voices. The initiative aims to amplify the patient and caregiver voice to inform the future of treatment for asthma in children.

The collaborative will host an externally-led patient-focused drug development (EL-PFDD) meeting on September 20, 2021, from 10 a.m. – 3 p.m. EDT. The goal of the meeting is to gather patient and caregiver insights about living with and managing pediatric asthma to share with the U.S. Food and Drug Administration (FDA), as well as researchers, clinicians, and drug developers.

“The patient voice is sometimes forgotten during the long and strenuous drug development process,” states Kenneth Mendez, CEO and president of the Asthma and Allergy Foundation of America. “We are honored to co-host this event to ensure that future innovative therapies are developed and reviewed based on input from real families living with chronic asthma, especially in children.”

Anyone who has experience living with and/or managing asthma in childhood is invited to attend the Little Airways, Big Voices EL-PFDD meeting. Participants will be invited to call in, submit written comments and questions, and take polls.

Patients and caregivers can also add their voice to the initiative by completing a brief survey or submitting written comments about their experiences living with and managing asthma in childhood.

“There are more than six million children living with asthma, making it the most common chronic condition and one of the leading causes of school absenteeism,” said Albert Rizzo, M.D., chief medical officer for the American Lung Association. “Strategic partnerships like Little Airways, Big Voices are critical to advancing our research, treatment, and overall care for children with asthma.”

All the information gathered from this EL-PFDD meeting, survey, and written comments will be analyzed and summarized in a Voice of the Patient report to be released in 2022. The report will help inform the FDA, researchers, clinicians, and drug companies about what is important to people living with and managing asthma in children.

To learn more about the Little Airways, Big Voices initiative, visit littleairwaysbigvoices.org.

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ABOUT THE ALLERGY & ASTHMA NETWORK

The Allergy & Asthma Network is the leading nonprofit patient education and advocacy organization for people with asthma, allergies, and related conditions. The patient-centered network unites individuals, families, healthcare professionals, industry, and government decision makers to improve health and quality of life for Americans with asthma and allergies. The organization specializes in making accurate medical information relevant and understandable to all while promoting evidence-based standards of care. Learn more at allergyasthmanetwork.org.

ABOUT THE AMERICAN LUNG ASSOCIATION

The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education, and advocacy. Their work is focused on four strategic imperatives: to defeat lung cancer; champion clean air for all; improve the quality of life for those with lung disease and their families; and create a tobacco-free future. Learn more at lung.org.

ABOUT THE AMERICAN PARTNERSHIP FOR EOSINOPHILIC DISORDERS

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. Learn more at apfed.org.

ABOUT THE ASTHMA AND ALLERGY FOUNDATION OF AMERICA

Founded in 1953, the Asthma and Allergy Foundation of America (AAFA) is the oldest and largest non-profit patient organization dedicated to saving lives and reducing the burden of disease for people with asthma, allergies and related conditions through research, education, advocacy, and support. AAFA offers extensive support for individuals and families affected by asthma and allergic diseases, such as food allergies and atopic dermatitis (eczema). Through its online patient support communities, network of local chapters and affiliated support groups, AAFA empowers patients and their families by providing practical, evidence-based information and community programs and services. Learn more at aafa.org.

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PRESS CONTACT

Sanaz Eftekhari
Asthma and Allergy Foundation of America (AAFA)
Phone: 202.974.1223
Email: media@aafa.org

 

APFED Debuts New Podcast Series

Announcements, APFED Blog, Press Releases, What's New

“Real Talk: Eosinophilic Diseases” will feature free podcast conversations about living with eosinophil-associated diseases

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) has launched its new podcast series “Real Talk: Eosinophilic Diseases,” a conversational podcast series with featured guests on topics of interest to the eosinophilic disease community.

The podcast series kicks off with “Engaging Research,” an episode featuring Evan Dellon, MD, MPH, of University of North Carolina Chapel Hill School of Medicine. Dellon will discuss the shift toward patient-led research for eosinophilic diseases.

Other upcoming episodes include:

  •  “The Impact of Chronic Illness on Relationships” with featured guest Barbara Kivowitz
  • “Self-Advocating with an Eosinophil-Disease” with featured guest Debbie Alves
  • “EGID Elimination Diets: Creative Strategies to Make Mealtimes More Engaging” with featured guest Holly Knotowicz, MS, CCC-SLP

Listeners may tune in to all episodes of the podcast series at apfed.org/podcast and subscribe on Apple, Spotify, and Audible.

“Our podcast series is designed to help people with eosinophil-associated diseases and their caregivers stay informed on the latest topics in research and care,” said APFED’s Executive Director Mary Jo Strobel. “We hope patients and families will tune for real conversations about research progress, self-advocacy, elimination diets, and other topics that matter to our community.”

APFED’s podcast is made possible thanks to the support of education partners Bristol Myers Squibb, GlaxoSmithKline, and Sanofi Genzyme and Regeneron.

About the American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. https://apfed.org/

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APFED Announces Recipient for 2021 Hope Pilot Grant Award

APFED Blog, Press Releases, What's New

New research project will investigate the role of detergents in the pathogenesis of Eosinophilic Esophagitis (EoE)

 The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce that Benjamin L. Wright, MD will be the recipient of the organization’s HOPE Pilot Grant award this year.  Dr. Wright, an allergist and clinical immunologist at Mayo Clinic Arizona and Phoenix Children’s Hospital and Assistant Professor at the Mayo Clinic School of Medicine, will receive $50,000 in funding from APFED over a two-year period for his promising research study titled “The Role of Detergents in the Pathogenesis of Eosinophilic Esophagitis.”

Dr. Wright’s research will explore the potential effects of common household detergents on the esophageal mucosal barrier. The mucosal barrier is the specialized tissue that lines or coats the esophagus and protects it from potentially injurious agents. This layer is leaky in patients with eosinophilic esophagitis (EoE), which allows foods to stimulate inflammation, including eosinophil infiltration.

To test the project’s hypothesis, Dr. Wright’s team will evaluate the effects that detergents have on esophageal tissue in vitro and compare the results with samples obtained from EoE subjects and controls. Researchers will employ several novel techniques in this study, including the minimally invasive esophageal string test to collect samples.

The goal of the project is to better understand the mechanisms of EoE development and gain a specific understanding of how environmental factors such as detergents may contribute to this process.

“We are excited to support Dr. Wright’s project and are eager to learn the findings,” said APFED Executive Director Mary Jo Strobel. “We are grateful for the generous donors who recognize the importance of investing in research that helps us to better understand eosinophil-associated diseases Unlocking answers as to how EoE might develop brings us closer to curing the condition.”

“I am humbled by this award and indebted to my colleagues, mentors, and family whose efforts and sacrifice have enabled this research,” shared Dr. Wright.  “I am also grateful for my patients who serve as a constant source of motivation and inspiration to understand and cure EoE.”

APFED’s competitive research grant program, HOPE on the Horizon, is supported entirely by donations.  Grant recipients are selected through a competitive peer-reviewed process. Applicants are invited to submit a novel research idea that shows promise and conforms to the APFED mission to improve the lives of those living with eosinophil-associated diseases. These proposals are then reviewed and scored by an ad-hoc panels of expert reviewers, which guides APFED to select the most impactful projects with innovative ideas to fund. Successful grantees demonstrate a plan and the potential to receive subsequent, larger funding for their project.

About the American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. apfed.org

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