All posts by Amity Westcott-Chavez

A Statement from APFED

We are deeply saddened by recent events in America. APFED stands united and unwavering against discrimination, prejudice, and inequality. We recognize the emotional and physical harm caused by racism and discrimination and we are committed in our resolve for positive change.

As a patient advocacy organization, we recognize that health inequities are intertwined with systemic racism. To be effective patient advocates, we must strive for equal and affordable access to specialists, tests, medical foods, clinical trials, and treatments, in order to improve health-related outcomes for everyone.

APFED stands for equity in health care and research, and we look forward to continuing the conversation on how these issues can be addressed. In the interim, we will continue to make information and educational resources freely available through outreach efforts across the nation.

We also encourage our community members to continue sharing with us their experiences and journeys so that we may better understand unmet needs in order to more effectively advocate for our community. If you have questions, comments or would like to share your experiences, please contact us at support@apfed.org.

APFED & CEGIR Announce Recipient for 2020 Co-funded Pilot Grant Award

ATLANTA, GA & CINCINNATI, OH – APFED and CEGIR have awarded a 2020 co-funded pilot grant award to Paneez Khoury, MD, MHSc, of the National Institute of Allergy and Infectious Disease’s Human Eosinophil Section, for a promising research study that will provide the first examination of gastric motility in patients with eosinophilic gastritis (EG).

APFED is providing $25,000 in funding for 2020 while CEGIR will provide funding for 2020 and 2021.

Dr. Khoury’s project will examine if allergy mediated inflammation causes fibrostenotic changes in the stomach tissue to contribute to commonly experienced EG symptoms, such as bloating and early satiety, and if it causes a slower emptying of stomach contents into the small intestine.  This important work will influence the selection of drugs that will be studied in future EG clinical trials.

Established in 2020, the APFED/CEGIR II Co-funded Pilot Grant is the result of a collaborative effort between APFED and CEGIR to enable investigators from a variety of disciplines to initiate projects relevant to eosinophil-associated diseases, with a focus on the development of new and inventive ideas that are likely to lead to future external funding and better patient outcomes.

“Over the last six years, APFED has collaborated with CEGIR to advance research for eosinophilic gastrointestinal diseases. The partnership of patient advocacy groups with clinician-investigators, as offered through the Rare Diseases Clinical Research Network (RDCRN), facilitates this type of targeted study,” said APFED President Dr. Wendy Book. “Gaining a better understanding of the motility issues impacting patients diagnosed with EG is important, and we are pleased to support Dr. Khoury’s project.”

Principal Investigator Dr. Paneez Khoury said, “The selection of this proposal by APFED/CEGIR co-funded Pilot Grant is critical to understanding the natural history and pathogenesis of gastric dysfunction below the esophagus. The funding and prioritization of this research will provide the ability to explore whether persistent gastrointestinal symptoms in EG may be related to gastric motility problems and provide insights into the patient experience of disease, disease pathogenesis, as well as long-term impacts of eosinophilic gastritis.”

APFED’s competitive research grant program, the Hope on the Horizon Research Fund, is supported entirely by donations.  For more information, please visit apfed.org.

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 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 (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.rarediseasesnetwork.org/cms/cegir/

 

Meet Kaylee!

Last September, not long before her 8th birthday, Kaylee was diagnosed with eosinophilic fasciitis, a rare condition that occurs when eosinophils, a type of white blood cell involved in a number of inflammatory processes, cause thickening and inflammation of the connective tissue under the skin. Over time, the tissue may harden and give an irregular, pitted appearance to the skin, resembling the skin of an orange peel.

The condition caused Kaylee’s feet to become hardened and as a result, she began to have difficulty moving them like she did before, which impacted her ability to play sports.

Kaylee was also diagnosed with other conditions, including scleroderma, and it wasn’t long before she began a treatment course that included IV infusions, and frequent blood tests.

Kaylee’s message of hope to those who are struggling with an eosinophil-associated disease or other chronic conditions: “Dream it. Believe it. Achieve it.”

“Kaylee never gave up,” her mother Amberly shares. “She and I made a promise to one another to always keep a positive outlook and to make the absolute best of the situation. Despite all she has gone through, she continues to keep a smile on her face and do what she can to help others.”

The first few IV treatments were very hard for Kaylee. One day she asked her mother to turn on music during her treatment which helped calm her and made the experience better. “A few short months into treatment, Kaylee knew she wanted to inspire everyone who is going through a hard time,” says Amberly. Whether it’s a chronic medical condition like eosinophilic fasciitis, or social challenges like bullying, everyone goes through something difficult at some point in time, and Kaylee wanted to share the message of hope.”

Kaylee soon wrote and recorded a song, “Hold On,” which she makes freely available through online music platforms. She has also forged ahead by supporting the work of community charities, such as fighting huger, making a cleaner environment, and supporting U.S. troops. Today, Kaylee is a social media influencer for kids, and supports the efforts of community charities by helping to fight hunger, environmentalism, and supporting U.S. troops.  Last year, she became an ambassador for the girl’s clothing line, Justice.

To hear Kaylee’s song, Hold On, or to connect with her and share how you are spreading joy, visit https://www.itskayleerenee.com/.

APFED Announces Recipient for 2020 Hope APFED/AAAAI Grant Award

Funded study seeks to define the molecular and immunologic details of t-cell antigen specificity in eosinophilic esophagitis (EoE)

ATLANTA, GA —The 2020 Hope APFED/AAAAI Grant Award has been awarded to David A. Hill, MD, PhD, of University of Pennsylvania’s Department of Pediatrics and Children’s Hospital of Philadelphia’s Division of Allergy and Immunology, for a promising research study that will utilize state-of-the-art techniques in experimental immunology to provide the first examination of the immune cells that contribute to the emerging food allergy eosinophilic esophagitis.

Dr. Hill is the recipient of a $140,000 grant over two years for his promising research study titled “Interrogation of Pathogenic T-cell Clonotypes in EoE.” The award will be funded equally between the American Partnership for Eosinophilic Disorders (APFED) and the American Academy of Allergy, Asthma & Immunology (AAAAI).

Dr. Hill’s project will try to understand how the immune system interacts with food allergens to cause EoE. By expanding our understanding of allergen/immune cell interactions, this work will contribute to identifying new immune targets for drug development.

Established in 2013, the Hope APFED/AAAAI Grant Award is the result of a collaborative effort between APFED and AAAAI to enable investigators from a variety of disciplines to initiate projects relevant to eosinophil-associated diseases, with a focus on the development of new and inventive ideas that are likely to lead to future external funding and better patient outcomes.

“The Hope APFED/AAAAI Grant Award attracts outstanding applicants who represent a broad range of perspectives in the study of eosinophil-associated disorders, and this project in particular shows great promise to move the field forward,” said APFED Executive Director Mary Jo Strobel. “Supporting new research is a key part of APFED’s mission, and we appreciate our donors, volunteers, and our funding partner AAAAI for making it possible to advance Dr. Hill’s work.”

“This support is critical to initiating the next phase of EoE research. In addition to funding a novel data resource for the field, this work will provide preliminary data that we hope will lead to future NIH-funded research programs focused on EoE pathogenesis,” said Principal Investigator Dr. David Hill.

APFED’s competitive research grant program, the Hope on the Horizon Research Fund, is supported entirely by donations. For more information, please visit apfed.org.

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/

6 Easy Ways You Can Support Research of Eosinophil-Associated Diseases

Looking for simple ways to make an impact during National Eosinophil Awareness Week? Learn how you can support APFED’s HOPE on the Horizon Research Program andthe groundbreaking work APFED has supported, including innovative new projects!

  1. Donate via our website or Facebook.
  2. Launch an online fundraiser to benefit APFED via Facebook and MightyCause are a few examples of platforms that make it easy.
  3. Designate APFED as a charity recipient when you shop at AmazonSmile, and Amazon gives back! Go to amazon.com/ch/76-0700153 for details.
  4. Ask your employer about matching donations to APFED.
  5. Work with us to bring a fundraiser to your neighborhood. Please email Julie Forrest at jforrest@apfed.org to get started!
  6. Consider participating in a research interview, survey, or a clinical trial.

On behalf of our community, thank you for your support this week and year-round!