All posts by Amity Westcott-Chavez

APFED Invites Scientific Community to Apply for Research Grant Funding

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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/.

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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.

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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 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

washington-dc

APFED to Host Patient Education Conference in Washington, DC Area on July 25-27, 2019

Press Releases, What's New

Contact: Mary Jo Strobel, American Partnership for Eosinophilic Disorders, Phone: (713)-493-7749, Email: mjstrobel@apfed.org

PRESS RELEASE
For Immediate Release

APFED to Host Patient Education Conference on Eosinophil-Associated Diseases in Washington, DC Area on July 25-27, 2019

Eos Connection 2019 will be held in collaboration with Children’s Hospital of Philadelphia (CHOP) and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED) will host its 17th annual Eos Connection Patient Education Conference on eosinophil-associated disease (EADs) on July 25-27 in Bethesda, MD. The conference is a unique opportunity for patients, families, caregivers, advocates, and experts from across the United States to exchange knowledge, experiences, needs, and perspectives.

For eight-year-old Jack Burstein, Eos Connection is a chance to make new friends who struggle with EADs and visit with a group of children he looks forward to seeing every year. Jack receives care at the Children’s Hospital of Philadelphia (CHOP), an educational partner for this year’s conference.

As Jack’s mother Juliet Ross explains, “Eos Connection is an extraordinary experience. As a mom, it is very moving to see my son with children like himself. He feels a unique comradery among this group of children, many of whom have feeding tubes like he does. And there is no other time for me to be among parents who face the challenge of feeding children who have difficulty eating.”

Eosinophil-associated diseases 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.

Eos Connection 2019 will take place at the DoubleTree by Hilton in Bethesda, MD.  The conference will feature three days of networking and social opportunities, conference sessions, and breakouts sessions on specific topics of interest. Those who cannot attend in-person may participate in and view a webcast of select general sessions.

This year’s Eos Connection is being held through collaborative partnerships with CHOP’s Center for Pediatric Eosinophilic Disorders and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).  The conference will provide a patient-centered program that highlights important information in the clinical and research areas.  Attendees will learn the latest advancements in the diagnosis and treatment of EAD, research updates, and practical strategies to help patients with disease management.  The agenda will also include programs for children and teens.

“APFED is thrilled to partner with CHOP’s Center for Pediatric Eosinophilic Disorders, the Consortium of Eosinophilic Gastrointestinal Disease Researchers, and a robust lineup of speakers to provide patients and families with education and resources to effectively navigate eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “Year after year, Eos Connection is a unique opportunity for our community of patients, caregivers, and providers to connect, learn, and share in a supportive environment. It’s a forum to acknowledge and work through challenges, celebrate successes, share insights and solutions, and foster hope for a brighter future.”

“We’re excited to share our latest breakthroughs in food allergy research directly with families,” says Jonathan Spergel, MD, PhD, Chief of the Allergy Program at Children’s Hospital of Philadelphia. “Parents, caregivers, and patients themselves will have the opportunity to hear from leaders in the field of allergy research about what’s being done to combat these conditions.”

Eos Connection 2019 is made possible thanks to the generous support of APFED’s Education Partners, including Platinum Education Partner Abbott.

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 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 of Philadelphia (CHOP)

About Children’s Hospital of Philadelphia: Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. In addition, its unique family-centered care and public service programs have brought the 564-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.

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.