All posts by Mary Jo Strobel

APFED Honors Michaella Lesieur with 2018 Elizabeth Allen Award

Announcements, APFED Blog, What's New

Every year, APFED’s Executive Board recognizes an APFED member who has shown a deep commitment to our mission and made impactful contributions in the areas of research, education, advocacy and awareness. This year, it is our honor and pleasure to present the 2018 Elizabeth Allen Award to Michaella Lesieur.

Named for one of APFED’s founding mothers Elizabeth (Mays) Allen, this award is presented in recognition of an outstanding community member who goes “above and beyond” to help APFED advance our mission and reach our goals.

Though she is the youngest recipient of this award at age 23, Michaella has long been a strong voice and dedicated force in our community.  For the past four years, she has worked on a variety of platforms and through many channels to raise the awareness of eosinophil-associated diseases.

For the past three years, Michaella has organized a very successful Hope on the Horizon Fun Run and Walk in Massachusetts, where supporters have raised more than $19,000 to benefit APFED’s HOPE on the Horizon Research Fund. Michaella has held this event in honor of her mother, who was diagnosed with Hypereosinophilic Syndrome (HES), a rare eosinophil-associated disease of the blood that can affect any organ.

In addition, Michaella has created awareness-raising toolkits for National Eosinophil Awareness Week (held the third week in May) and produced a video to showcase APFED’s #READ4EAD campaign. She has also raised awareness in her community by writing about eosinophil-associated disease in her college newspaper and holding an educational event at an elementary school that was featured by local media.  Most recently, Michaella completed her honors thesis project at UMass Dartmouth on the communications associated with fundraising.

Please join us as we recognize and celebrate Michaella’s contributions to our patient community. We are grateful for her hard work, enthusiasm, generous spirit, and all she has done to support families living with eosinophil-associated diseases!

APFED’s 2018 Eos Connection Patient Education Conference on Eosinophil-Associated Diseases (July 6-7, 2018) to Be Held July 6-7 in Aurora, CO

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(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED) will be hosting its 16th annual patient education conference on eosinophil-associated disease July 6-7 at the Hyatt Regency Aurora-Denver.

Eosinophil-associated diseases (EADs) are chronic inflammatory disorders characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific places in tissues, organs, and/or bloodstream, which in turn causes inflammation and damage. These chronic diseases require lifelong treatment and symptoms may be debilitating.

The 2018 Eos Connection conference is being held in collaboration with Children’s Hospital Colorado (Children’s Colorado) and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). The program features more than 25 patient-tailored educational and experiential sessions for patients, caregivers, researchers, clinicians, advocates, industry representatives, and others. Attendees will learn the latest advancements in the diagnosis and treatment of EAD, research updates, and practical strategies to help patients with disease management. Those who cannot attend in-person may participate in/view a webcast of general sessions offered on both days.

“APFED is honored to collaborate with the Gastrointestinal Eosinophilic Diseases Program at Children’s Colorado as well as the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) for our annual event,” said APFED Executive Director Mary Jo Strobel. “The Eos Connection conference offers participants a valuable opportunity to exchange their own knowledge, experiences, needs, and perspectives.”

“APFED’s mission to passionately embrace, support, and improve the lives of patients and families affected by EGIDs aligns with my goal to strengthen the care and service we provide in our seven-state region,” said Glenn Furuta, MD, Director, Gastrointestinal Eosinophilic Diseases Program at Children’s Colorado. “I am proud to be part of a conference where families come year after year not only to learn the latest information and strategies for better living with EGIDs, but also to reconnect with one another and to welcome new members to our community.”

“It is important to me that families are provided the information and education they need to make informed decisions and choose the treatment option that best fits their goals,” said Dan Atkins, MD, Co-Director, Gastrointestinal Eosinophilic Diseases Program, Pediatric Allergy and Head of the Allergy and Immunology Section at Children’s Colorado. “APFED gives families the opportunity to share challenges, concerns, and coping strategies with others who truly understand provides patients and family members with a sense of relief and empowerment.”

Eos Connection 2018 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partner Celgene, and Platinum Partners AstraZeneca and EleCare®. Learn more about the conference and register at apfed.org.

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 About American Partnership for Eosinophilic Disorders (APFED)

APFED is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s 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 Children’s Hospital Colorado

Children’s Hospital Colorado is a leading pediatric network 100 percent dedicated to the health and well-being of children, adolescents and young adults. Consistently acknowledged as one of the nation’s top pediatric hospitals by U.S. News & World Report, Children’s Colorado is recognized nationally and internationally for its medical, research, education and advocacy programs. It is at the forefront of research in childhood disease and pioneering treatments that are shaping the future of pediatrics, as well as offering everyday care for kids throughout Colorado and surrounding states. Founded in 1908, Children’s Colorado offers a full spectrum of family-centered care at its urgent, emergency and specialty care locations throughout Metro Denver and Southern Colorado, including its location on the Anschutz Medical Campus. Scheduled to open in early 2019, the new Children’s Hospital Colorado, Colorado Springs will be the first pediatric-only hospital in southern Colorado. For more information, visit www.childrenscolorado.org, or connect with us on Facebook and Twitter.

Children’s Hospital Colorado complies with applicable Federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.

ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-720-777-9800.

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About the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)
CEGIR (U54AI117804) is a part of the NCATS Rare Diseases Clinical Research Network (RDCRN). RDCRN is an initiative of the Office of Rare Diseases Research (ORDR), NCATS, funded through a collaboration between the NCATS, the NIAID and the NIDDK.  CEGIR is also supported by patient advocacy groups including APFED, CURED and EFC. www.rdcrn.org/cegir.

APFED Announces 2018 Hope APFED HOPE Pilot Grant Recipient

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Funded study will examine the long-term consequences of eosinophil depletion and the immunoregulatory role of eosinophils

ATLANTA, GA— The American Partnership for Eosinophilic Disorders (APFED) has awarded a 2018 HOPE Pilot Grant Award to Dr. Fei Li Kuang, Allergy & Clinical Immunology Fellow, National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health (NIH) in Bethesda, Maryland.

Dr. Kuang will receive $50,000 from APFED over a two-year period to carry out her research project entitled, “Effects of Eosinophil Depletion on Pathogenic Lymphocytes in Hyper-eosinophilic Syndrome (HES)/EGID Overlap.” HES/EGID overlap is a subtype of hyper-eosinophilic syndrome (HES) with isolated gastrointestinal damage where patients experience similar but more severe disease manifestations as those with eosinophilic gastrointestinal disorders (EGID).

Eosinophils are thought to be effector cells in disease. Effector cells are activated cells that defend the body in an immune response. However, murine studies increasingly indicate eosinophils may have regulatory roles as well. Recent eosinophil-targeted therapies in humans have become more effective in complete depletion of eosinophils from blood and tissues. In the setting of a completed phase two clinical trial, a small group of these patients were treated with an effective eosinophil-depletion therapy on a long-term basis.

This award provides a unique opportunity to determine the long-term consequences of eosinophil depletion and whether eosinophils have immunoregulatory roles in this disease. Dr. Kuang’s project will utilize multi-parametric flow cytometry and gene expression sequencing on peripheral blood and gut tissue to determine if eosinophils exert a negative regulatory role on pathogenic lymphocytes.

“Dr. Kuang’s work illustrates the new, innovative research being conducted that is critical to helping us to better understand the role of eosinophils and what the lasting effects might be if we did not have these specific blood cells. This work is important because potential therapies to treat eosinophil-associated disorders continue to move through the pipeline, some of which target depletion of eosinophils,” said APFED Executive Director Mary Jo Strobel.

“This project will provide a better understanding of the relationship between eosinophils and lymphocytes in HES/EGID with the goal of illuminating new research avenues, bringing us closer to improved therapeutics for patients suffering from this chronic disease,” said Dr. Kuang.

APFED’s HOPE Pilot grants 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.

To learn more about APFED’s HOPE on the Horizon Research Program and projects that APFED has funded, please visit apfed.org.

About APFED

American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s 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.

Upcoming events include Eos Connection 2018: APFED’s 16 Annual Patient Education Conference, July 6-7, 2018 in Denver. Learn more at apfed.org.

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APFED and IES to Partner on Code Proposal

Announcements, What's New

The American Partnership for Eosinophilic Disorders (APFED, apfed.org) and the International Eosinophil Society (IES, eosinophil-society.org) are pleased to announce their partnership and collaboration to propose 11 new ICD-10 Diagnostic Codes to the CDC Coordination and Maintenance Committee this fall.

The proposal will include rare subsets of eosinophil-associated diseases that currently do not have a diagnostic code, including Eosinophilic Pneumonia, Hypereosinophilic Syndromes, and Drug Rash with Eosinophilia and Systemic Symptoms.

These diagnostic codes are important in the research, treatment, and management of these diseases, which are currently coded only under general non-specific codes.  Unique codes will also help determine prevalence, allocation of health resources, and may improve enrollment into future clinical trials to bring forth better treatments.

Join APFED in Recognizing National Eosinophil Awareness Week on May 20-26, 2018

Press Releases, What's New

Contact: Mary Jo Strobel, Executive Director, (713) 493-7749, mjstrobel@apfed.org

Eosinophil-associated disease (EAD) community unites for action and awareness

(Atlanta, GA)— During the week of May 20-26, 2018, the American Partnership for Eosinophilic Disorders (APFED) is honoring the 11th Annual National Eosinophil Awareness Week (NEAW). NEAW was established in 2007 by APFED, a nonprofit advocacy organization, to support those who have eosinophil-associated diseases (EADs) and raise the level of education and awareness in the public and the medical community about these conditions.

Eosinophils (ee-oh-sin-oh-fil) are a type of white blood cell that play an important part of our immune system, helping us to fight off certain types of infections, such as parasites. Many different problems can cause high numbers of eosinophils in the blood including allergies (food and environmental), certain infections caused by parasites, and other problems. When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease.

The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDS), which affect the gastrointestinal tract and symptoms are often triggered by food. Treatments for these disorders include restricted diets or total food elimination, requiring patients to live off an elemental formula (taken either orally or via a feeding tube) and/or steroid treatments.

In honor of National Eosinophil Awareness Week, members of the eosinophil patient community are joining APFED as we inspire, educate, and remind patients and families that they are not alone.

How You Can Help Us
  •    Change your profile photo on Facebook to our new awareness frame. Follow this link and use the search box to find “NEAW Frame 2018.”
  •    Share facts about eosinophil-associated diseases on your social media pages using the hashtag #NEAW18
  •    Start a Facebook fundraiser to benefit APFED’s Hope on the Horizon Research Fund and ask friends and family to support you
  •    Download and share our new “I love someone with…” social media graphics; we have ten different subsets of eosinophil-associated disease available for you to highlight
  •    Join the National Eosinophil Awareness Week community on Facebook and write a post to share what you are doing
  •    Create your own NEAW event at your home, school, or workplace to inform your community
  •    Donate to APFED to help support our education, advocacy, support and research initiatives, or organize a local fundraiser; APFED can help!

“The more people who know about eosinophil-associated diseases, the stronger our community becomes and the more we are heard,” said APFED’s Executive Director Mary Jo Strobel. “When we share our stories and educate the broader community, we move everything forward and increase momentum. Increased awareness can lead to faster and better patient care, and it can boost funding for research that will lead us to better diagnostics and treatments.”

Due to the lack of awareness of these diseases, patients may suffer for years without an accurate diagnosis and appropriate treatment.  Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure, and there are no FDA-approved treatments for many subsets of eosinophil-associated disease.

“It’s through campaigns like NEAW that people who are unfamiliar with these diseases can learn more about them,” said APFED’s President Dr. Wendy Book. “This week mobilizes healthcare providers, researchers, and those living with these diseases to create one powerful, collective voice as we advocate on the issues that matter most to this community, from insurance coverage for medical foods to non-invasive treatment and testing options and much more.”

Organizations, healthcare providers, and institutions around the globe are joining APFED to recognize National Eosinophil Awareness Week by sharing information with their communities and with the public. Nutricia, the makers of Neocate®, a line of amino acid-based products, has partnered with APFED for its celebration of this special week by providing the means for the organization to disseminate educational material to health care providers and to the public.

Visit apfed.org to learn more about eosinophil-associated diseases and the ways our community is celebrating NEAW,  about current research efforts, and about community events that are taking place during this special week.

About American Partnership for Eosinophilic Disorders (APFED)

American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s 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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