All posts by Amity Westcott-Chavez

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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APFED to Host Virtual Patient Education Conference on Eosinophil-Associated Diseases, July 14-16, 2021

APFED Blog, Press Releases, What's New

EOS Connection 2021 will feature the latest research developments, practical management strategies, and opportunities for attendees to connect on an all-virtual platform

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) will host its 19th annual patient education conference, which features a three-day virtual program on eosinophil-associated diseases.

EOS Connection 2021 will provide a full conference experience using state-of-the-art virtual meeting technology. Patients, caregivers, families, advocates, healthcare providers, researchers, and education partners can learn and connect in the online environment that includes a theater to watch presentations, a poster hall highlighting new research, a networking lounge where attendees can interact, a new chat feature via text or video, and an exhibit hall where attendees can interact with conference partners, access resources and learn about products, services, and enrolling clinical trials.

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.

The live virtual events for EOS Connection 2021 will take place July 14- 16 from 11:30 a.m. to 3:45 p.m. Eastern Time each day. Presentations from expert speakers will include sessions on research advancements in eosinophilic gastrointestinal diseases and dietary therapies, as well as presentations specific to other subsets of eosinophil-associated diseases, including but not limited to eosinophilic asthma.  Attendees will also have opportunities to participate in live Q&A with the majority of presenters. After the live events conclude, recordings of the presentations and the poster and exhibit halls will continue to be available to attendees for on-demand access.

“This year’s agenda addresses a broad range of topics of importance to the eosinophilic disease community, and we’re grateful to our presenters, partners, and collaborators at CEGIR for the opportunity to deliver such an innovative and dynamic virtual education experience,” said APFED’s Executive Director Mary Jo Strobel. “We are pleased that the virtual format allows EOS Connection to once again widen our audience and become a true global event.”

Complimentary admission to EOS Connection 2021 is available to all APFED members.

EOS Connection 2021 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partner Takeda; Diamond Partner Sanofi Genzyme and Regeneron; Platinum Partners Allakos, AstraZeneca, Abbott, Ellodi Pharmaceuticals, and Mead Johnson Nutrition; and Gold Partners Bristol Myers Squibb, GlaxoSmithKline, Nutricia Neocate®, and Revolo Biotherapeutics.

To register for EOS Connection 2021, please visit: apfed.org/conference.

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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National Eosinophil Awareness Week (May 16-22, 2021) Recognizes Impact of Eosinophil-Associated Diseases

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

The American Partnership for Eosinophilic Disorders (APFED) will celebrate the 14th annual National Eosinophil Awareness Week (NEAW) from May 16-22, 2021. APFED is engaging people across the world to raise awareness of eosinophil-associated diseases.

Eosinophils (pronounced “ee-oh-sin-oh-fills”) are a type of white blood cell. They are part of the immune system and are involved in a number of conditions, including allergies and certain infections and inflammatory conditions. When a person has too many eosinophils, without a known cause, they may have an eosinophil-associated disease.

Eosinophil-associated diseases are rare and chronic conditions that require long-term management. Many patients experience delayed diagnosis. The diagnosis depends on where in the body the eosinophils are found. Eosinophil-associated diseases can be debilitating and impact quality of life. The conditions affect both adults and children.

In 2007, the third week of May was officially recognized as National Eosinophil Awareness Week when the U.S. House of Representatives passed House Bill 296. It is a special time in which patients, caregivers, health care providers, and organizations increase efforts to raise public awareness about these conditions.

“Every day, we are inspired by the resilience and strength of individuals with eosinophil-associated diseases and the family members who care for them,” said APFED Executive Director Mary Jo Strobel. “During National Eosinophil Awareness Week, sharing our stories offers hope to those who are affected and disseminating educational information helps the public understand the challenges of living with these conditions. With education and awareness, the diagnostic timeline decreases, suffering decreases, and research becomes better supported.”

APFED is grateful to its education partners for supporting its 2021 celebration of National Eosinophil Awareness Week. This includes Arena Pharmaceuticals, AstraZeneca, Bristol Myers SquibbTM, GlaxoSmithKline, Nutricia, the makers of NeocateⓇ, Sanofi Genzyme, Regeneron, and Takeda. Their support provides APFED with means to increase dissemination of educational materials to patients, providers, and the public.

To learn more about eosinophil-associated diseases and ways to celebrate National Eosinophil Awareness Week, please visit apfed.org/NEAW.

About American Partnership for Eosinophilic Disorders (APFED)

Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization that assists and supports patients and families affected by eosinophil-associated disorders, by providing education, creating awareness, supporting research, and promoting advocacy. To learn more, visit apfed.org.

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