All posts by Amity Westcott-Chavez

APFED’s Executive Director Recognized with 2023 AAAAI Distinguished Layperson Award

Strobel received the award during the Annual Meeting of the American Academy of Allergy, Asthma and Immunology (AAAAI)

ATLANTA, GA —The American Partnership for Eosinophilic Disorders (APFED) today announced that the American Academy of Allergy, Asthma and Immunology (AAAAI) has awarded APFED Executive Director Mary Jo Strobel with its 2023 Distinguished Layperson Award for her unwavering support and advocacy for eosinophilic disorders. The award was presented today during the 2023 AAAAI Annual Meeting in San Antonio, Texas.

Ms. Strobel has 25 years of professional experience in patient advocacy for allergic conditions and has served as APFED’s Executive Director since 2012. Ms. Strobel also has a broad background in patient education, awareness campaigns, and research, in addition to her achievements in advocacy.

Ms. Strobel has educated members of the U.S. Congress to encourage federal funding for research for eosinophil-associated disease and has encouraged their support for legislation for insurance reimbursement of medical foods and step therapy reform.  She was recently involved in the development and publication of a global patient charter to inspire policymakers and healthcare decision-makers to reform healthcare practices for people living with eosinophil-associated diseases and has educated managed care and payer professionals about the clinical and economic burden of EoE, current and emerging treatments, and the importance of early diagnosis and multidisciplinary care.

Ms. Strobel has also been involved in initiatives to provide the U.S. Food and Drug Administration with patient experience so that they are informed as they consider applications for new treatments and to inspire drug developers to consider new areas of research.

The AAAAI is the leading membership organization of more than 7,000 healthcare professionals with a special interest in the research and treatment of allergic and immunologic diseases. View the 2023 AAAAI Honorary Award Recipients.

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. www.apfed.org

About the American Academy of Allergy, Asthma & Immunology (AAAAI)

The American Academy of Allergy, Asthma & Immunology (AAAAI) represents allergists, asthma specialists, clinical immunologists, allied health professionals and others with a special interest in the research and treatment of allergic and immunologic diseases. Established in 1943, the AAAAI has more than 7,000 members in the United States, Canada and 72 other countries.  www.aaaai.org/

APFED Announces Fei Li Kuang as Second HOPE Pilot Grant Award Recipient of 2022

(Atlanta, GA) The American Partnership for Eosinophilic Disorders (APFED) is proud to announce that, thanks to the generosity of donors, the organization has awarded a research grant to Fei Li Kuang, MD, PhD, Assistant Professor at Northwestern University Feinberg School of Medicine. Dr. Kuang will receive $100,000 from APFED for a two-year project to examine how blood eosinophils in eosinophilic gastrointestinal disease (EGID) differ from those of other eosinophilic diseases, and how T-cells in EGIDs differ from those in food allergy.

The data gleaned from this study will provide the foundation for developing new non-invasive diagnostic tools for EGIDs and other eosinophil-associated diseases.

“I sincerely appreciate all the hard work that APFED does to support research in and patients with eosinophilic disorders such as HES and EGIDs,” shared Dr. Kuang. “This award will allow my research program to advance our understanding of EGIDS and ultimately improve patient quality of life,  goals that are deeply important to me as these are also my patients.”

This is the second HOPE Pilot Grant APFED has awarded this year, thanks to community support. In July, the organization announced a two-year, $100,000 grant awarded to Dr. Michael Rosenblum at University of California in San Francisco to study the cellular and molecular interaction of skin fibroblasts (cells that are part of the skin’s structure) with eosinophils to determine the causes of disease and its relapse.

Recipients of APFED’s HOPE Pilot Grant award are chosen through a competitive peer-review process, which is how premier scientific funding agencies like the National Institutes of Health ensure top-level research in the field is funded. The grant was established to support researchers as they initiate new, innovative projects relevant to eosinophil-associated diseases that are likely to be impactful.

An ad-hoc committee of volunteer peer reviewers, experts in the field of eosinophil-associated disease research, review and score each proposal APFED receives for funding consideration. This rigorous process helps APFED to identify the best research that will have the biggest impact to best to direct donor dollars.

APFED is grateful for donors and community fundraisers that have supported the HOPE on the Horizon Research Grant Program. The advances toward a better understanding of eosinophil-associated diseases, non-invasive and accurate diagnostics, and therapeutic targets are not possible without the generosity of donations to this program.

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. www.apfed.org

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APFED Announces 2022 NASPGHAN Outstanding EGID Abstract Award Recipients

Award honors two best-scoring abstracts focused on eosinophilic gastrointestinal disease

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) has recognized two outstanding research works at the Annual Meeting of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) held October 12-15 in Orlando, Florida. NASPGHAN is the professional society for pediatric gastroenterologists in North America, serving clinical gastroenterologists and scientists from the U.S., Canada, and Mexico.

Two recipients were presented with an Outstanding EGID Abstract Awards at the annual meeting. These awards were established to recognize the best-scoring abstracts on eosinophil-associated gastrointestinal diseases (EGIDs) and the funds help offset travel costs to attend the meeting and present their finding to their peers.

The 2022 NASPGHAN Outstanding EGID Abstract Award recipients are Jessina Thomas, MD, of Arnold Palmer Hospital for Children in Orlando, FL, for her abstract titled, “Monitoring Eosinophilic Esophagitis Disease Activity Using the Blind Esophageal Brushing Method,” and Rethavathi Janarthanam, PhD, of Lurie Children’s Hospital in Chicago, IL, for her abstract titled, “Carboxypeptidase A3 Is Elevated in Mast Cells Spatially Located by Basal Epithelial Cells and Drives Basal Cell Hyperplasia via Loss of Desmoglein-1 in Eosinophilic Esophagitis.”

Dr. Thomas and her team looked at a less invasive alternative to serial endoscopies to monitor changes in patients with eosinophilic esophagitis. The aim of this study was to examine a model using serial blind esophageal brushings (collecting eosinophils using a brush through an NGT) to monitor therapy response through eosinophil-derived neurotoxin (a potential biomarker for inflammation/increased numbers of eosinophils) levels and guide therapy decisions in EoE patients. This study suggests a model in which blind esophageal brushing can be used to monitor therapy response and disease activity in pediatric patients with established EoE.

Dr. Janarthanam’s team studied the role of mast cells in the esophagus to determine their role in eosinophilic esophagitis.  This study is looking at specific chemical signals released by mast cells that affect the function of the epithelial layer of the esophagus. The results of this study led researchers to conclude that one of these chemical signals, CPA3+, is present in active EoE and causes the overgrowth of the cells and loss of barrier integrity.

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. www.apfed.org.

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Voice of the Patient Report: Unmet Needs of Asthma in Childhood

“Asthma has truly impacted, not just my life and the way I live every day, but my family’s life and who I am as a person today.”

– Regan Lloyd, 17-year-old living with asthma

To bring the voice of patients and caregivers impacted by asthma in childhood to the forefront of drug development and research, the Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America collaborated to produce the Voice of the Patient Report on Asthma in Childhood. The report is part of the Little Airways, Big Voices initiative.

The report highlights what is important to people living with and managing asthma in childhood. It will help the U.S. Food and Drug Administration make decisions as they consider new treatment options. It will also help researchers, clinicians, and drug developers as they consider new areas of research.

Throughout the Little Airways, Big Voices initiative, we heard that people managing asthma in childhood want treatments that reduce asthma symptoms, have fewer side effects, and allow them to participate in more activities.

Now we ask that all stakeholders work together to improve the quality of life for people managing asthma in childhood. Together, we can take steps to improve asthma education, advocacy, research, and drug development.

Your Voice Makes a Difference

Your stories help us raise awareness about asthma in childhood. This includes everyone who participated in the Little Airways, Big Voices externally-led patient-focused drug development meeting on September 20, 2021, submitted written comments, and/or completed our online survey.

Special thanks also to Sanofi, Regeneron, Amgen, and Novartis for sponsoring the Little Airways, Big Voices initiative.

What Is a Voice of the Patient Report?

The FDA established the patient-focused drug development (PFDD) initiative to collect patient insights on specific diseases, including their impact on daily life and treatment options. PFDD meetings are designed to connect patients and caregivers directly with the FDA, as well as researchers and drug developers. Some PFDD meetings are led by the FDA and others are externally led by patient advocacy organizations. The meetings and resulting Voice of the Patient reports help the FDA identify what is important to patients. This includes what people want treatment to look like (apart from a cure).

On September 20, 2021, the Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America hosted a virtual externally-led patient-focused drug development meeting about asthma in childhood.

The Voice of the Patient Report on Asthma in Childhood summarizes the findings from that meeting. The report also includes findings from written comments and results from an online survey. The report will help the U.S. Food and Drug Administration make decisions as they consider new treatment options. It will also help researchers, clinicians, and drug developers consider new areas of research.

 

 

Deadline July 15: Call to action for Medical Nutrition Equity Act!

Call to action! This is our best year to pass the Medical Nutrition Equity Act! Be sure to share your story by July 15!

The White House is collecting personal stories their upcoming White House Conference on Hunger, Nutrition, and Health this fall. They will use the stories to develop a policy agenda that will be backed by President Biden and Congressional Leadership. We need YOU to submit your story to help explain why the Medical Nutrition Equity Act should be a priority for this conference. Getting it included will be enormously helpful in our efforts to get the bill passed this year!

The deadline is July 15, but please do it TODAY and ask your friends and family to also submit comments!

INSTRUCTIONS for submitting your personal medically necessary nutrition story to the White House’s Conference on Hunger, Nutrition and Health:

Click here – https://bit.ly/whcsept2022

Scroll to the form at the bottom titled, “White House Conference on Hunger, Nutrition & Health – Share Your Ideas & Stories”

Fill out your name and contact information

In the “Please share your ideas/stories” section, individuals comments should include the following:

– Share your individual story about why medically necessary nutrition is critical to your life

-Make sure to talk about what it is like to live with the uncertainty of access to your medically necessary nutrition.

– Specifically ask that the Conference include a focus on access to medically necessary nutrition and legislation to address these issues, such as the Medical Nutrition Equity Act