All posts by Amity Westcott-Chavez

Supporting Students with Eosinophil-Associated Disease at School

APFED Blog, Press Releases, What's New

APFED’s efforts focus on creating a supportive and safe environment for students affected by chronic eosinophilic disorders

(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED), a non-profit advocacy organization established in 2001, offers a wealth of free resources and tools online to support children with eosinophilic-associated diseases in a school environment.

Eosinophils are a type of white blood cell that plays a role in fighting off certain infections and in allergic reactions and inflammatory processes. When a person has too many eosinophils without a known cause, he/she may have an eosinophil-associated disease.

These chronic and sometimes debilitating conditions are further characterized by the areas of the body in which the eosinophils have accumulated. The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDs), which affect the esophagus, stomach, and/or intestines.

It is not known what causes EGID, but food and environmental allergies may play a role.  Therefore, students with EGID may need to follow special diets, and in some cases, these diets may be severely restricted. In some cases, a special formula, sometimes delivered via a feeding tube, may be required to ensure adequate nutrition.

“The school setting can be stressful for students who have an eosinophil-associated disease,” said APFED Executive Director Mary Jo Strobel. “In addition to adhering to challenging dietary restrictions that might be prescribed as treatment, students may feel symptomatic, such as feeling nauseous or fatigued, and may miss many school days as a result. This in turn can underscore feelings of anxiety, isolation, and depression.”

APFED’s school resources are designed specifically to empower students, families, educators, and school staff to better plan for EGID management in the school setting.

Available freely to the public on apfed.org, the resources include information about Section 504 and Individual Education Plans (IEP), as well as templates, forms, and sample accommodations that could be considered for students with EGID.  The website also offers recorded webinars and video interviews with a variety of experts about managing EGID and school.

“As more cases of EGID are diagnosed, the need for education rises,” says Strobel. “Our newest resource includes a classroom-friendly information sheet that explains EGIDs to the students and teaches them how they can help a friend or classmate who has this condition.”

To learn more about eosinophil-associated disease and to access free school resources, visit apfed.org.

###

 

About Eosinophil-associated Diseases

Eosinophils (“ee-oh-sin-oh-fills”) are a type of white blood cell that helps our immune systems fight off infections and parasites. They also play a role in allergic reactions and inflammatory processes.

When a person has symptoms and an elevated number of eosinophils in their tissues, organs, and/or bloodstream, without a known cause, he/she may have an eosinophil-associated disease. These conditions are further characterized by the areas of the body in which the eosinophils have accumulated.

A few examples include the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), or the lungs (eosinophilic asthma).

Symptoms of eosinophil disease may vary depending on the area of the body affected, and by age. Patients often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Most subsets of eosinophil-associated disease do not yet have an FDA-approved pharmaceutical indicated for treatment.

 

About American Partnership for Eosinophilic Disorders (APFED)

The 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 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

APFED Invites Scientific Community to Apply for Research Grant Funding

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

Community Donations to APFED Will Fund New Research of Eosinophil-associated Diseases

 (Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED), a non-profit advocacy organization established in 2001, is inviting scientific investigators to submit research proposals for funding consideration.

The 2020 APFED HOPE Grant was established to foster the development of new projects relevant to eosinophil-associated diseases. Investigators from a variety of disciplines are encouraged to apply. Successful applicants will focus on the development of new ideas which are likely to lead to future external funding.

Eosinophils (pronounced “ee-oh-sin-oh-fills”) are a type of white blood cell that helps our immune systems fight off infections and parasites. They also play a role in allergic reactions and inflammatory processes.

When a person has symptoms and an elevated numbers of eosinophils in their tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease.

These conditions are further characterized by the areas of the body in which the eosinophils have accumulated. A few examples include the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), or the lungs (eosinophilic asthma).

Symptoms of eosinophil disease may vary depending on the area of the body affected, and by age. Patients often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Most subsets of eosinophil-associated disease do not yet have an FDA-approved pharmaceutical indicated for treatment.

“APFED’s HOPE on the Horizon Research Program is funded entirely by community donations,” said APFED Executive Director Mary Jo Strobel. “We are appreciative of the generous gifts that have enabled us fund research grants. To ensure donations have as much impact as possible, APFED employs a peer-review process that is both rigorous and fair. This process guides the selection of the proposal that is likely to have the biggest impact for patients who suffer from eosinophil-associated diseases.”

APFED’s HOPE Grant will award up to $50,000 over a two-year grant term. The deadline to submit a Letter of Intent to APFED is October 24, 2019, and applications are due November 21, 2019. The awards will be made in the spring.

For complete details, terms, application requirements, and to submit a proposal, please visit https://apfed.org/research/grant-application-for-researchers/.

###

 

About American Partnership for Eosinophilic Disorders (APFED)

The 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 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

 

Shelly Parks Recognized with 2019 Elizabeth Allen Award

Announcements, APFED Blog, What's New

Each year, APFED’s volunteer Board of Directors honors an APFED member who has shown a deep commitment to our mission and made significant contributions in the areas of research, education, advocacy, and awareness. APFED is pleased to present the 2019 Elizabeth Allen Award to Shelly Parks (pictured above with her mother and fiancé).

This award, named for one of APFED’s founders, recognizes an outstanding community member who goes above and beyond to make broad impact in the areas of APFED’s mission points of education, awareness, advocacy and research.

In 2016, Shelly Parks began her battle with hypereosinophilic syndrome (HES). Before becoming ill, she graduated with her second master’s degree at the age of 26, was a CrossFit competitor, and enjoyed life with her fiancé and their dog. Since her diagnosis, Shelly has dedicated her time and efforts to support patients with eosinophil-associated disease.

Shelly works to raise awareness and educate others about these conditions, both on local and national levels. This spring, she joined APFED at Medical Nutrition Hill Day in Washington, DC to share her story with legislators and seek support of the Medical Nutrition Equity Act, which is federal legislation that would provide insurance coverage of medical foods when prescribed to treat certain medical conditions.

She has also shared her perspective to inform stakeholders about meaningful therapies for HES patients, and most recently joined us as a panelist  at APFED’s 2019 Eos Connection Patient Education Conference, sharing her journey with HES.

In addition, Shelly has organized successful community fundraisers to support critical research needs in the hopes of finding a cure.

Please join us as we honor and celebrate Shelly’s contributions to our community. We are thankful for her generous spirit, her dedication to advancing education and treatments for HES, and the inspiration she offers to patients living with eosinophil-associated diseases!

Haley Royko Memorial Scholarship Recipients Announced

Press Releases

APFED is pleased to announce Alexandra Dymond and Nathaniel Ross have been awarded the Haley Royko Memorial Scholarship.

This spring, APFED invited students to apply to receive a $1,000 college scholarship for the 2019-2020 school year. These scholarships were offered thanks to two generous donors who made their gifts in memory of Haley Royko, a remarkable community member who sadly passed away last year at a young age.

Congratulations, Alexandra and Nathaniel! We wish you the best of luck this school year.

washington dc

APFED to Kick Off 17th Annual Patient Education Conference on Eosinophil-Associated Diseases in Washington, D.C. Area (July 25-27, 2019)

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

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce that its 17th Annual Patient Education Conference on Eosinophil-Associated Diseases (EADs) will be held next week in the Washington, D.C. area on July 25-27. This annual event is attended by patients, caregivers, families, advocates, healthcare providers, and researchers, who all come together to learn and network in a supportive environment.

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.

EOS Connection 2019 will take place at the DoubleTree by Hilton in Bethesda, MD.  The conference will feature presentations from medical experts, engaging breakouts sessions, and three days of social events. A webcast of select sessions is available to “virtual” registrants.

This year’s EOS Connection conference is held in collaboration with the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia (CHOP) and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).  Attendees from around the globe participate in APFED’s conference to learn the latest in disease diagnostic and treatment advancements, get research updates from experts in the field, and learn practical strategies to help cope with the physical and emotional challenges of living with these disorders. The conference also includes special programming for children and teens.

The three-day event will end on July 27 with a family-friendly social mixer and casino-themed fundraiser that is open to the public and will benefit eosinophil-associated disease research.

“EOS Connection is truly a special event. It is inspiring to see our patient community come together with such excitement, enthusiasm, and willingness to support one another,” said APFED Executive Director Mary Jo Strobel. “We are deeply grateful to our esteemed panel of speakers who are lending their time and expertise to teach patients, and we are excited to welcome attendees onsite for what promises to be an amazing weekend that inspires hope.”

EOS Connection 2019 is made possible thanks to the generous support of APFED’s Education Partners, including Platinum Partners Abbott, AstraZeneca, and Celgene.

Learn more about the conference and register at apfed.org.

###

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 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