All posts by Amity Westcott-Chavez

APFED’s Virtual Hike for HOPE Weekend (October 17-18, 2020)

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For Immediate Release


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

APFED’s Virtual Hike for HOPE Weekend Unites Eosinophilic Disease Community (October 17-18, 2020)

Event will help APFED fund research initiatives to advance eosinophil-associated diseases

(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED) invites patients, families, and supporters to gather together virtually on October 17 and 18 for the first national Hike for HOPE event. All proceeds will benefit APFED’s HOPE on the Horizon Research Program, which awards grants for innovative research proposals designed to lead to a better understanding of eosinophil-associated diseases

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.

Hike for HOPE participants can download and use the free Charity Miles app on their smartphone and join APFED’s hike team to track the team’s collective miles. They can then share with family and friends that they are participating in this virtual event and ask for their support by donating to APFED.

On Saturday, October 17 and Sunday, October 18, participants are encouraged to open the Charity Miles app to track their activities (walking, running, biking, dancing, or any activity they wish). APFED will award prizes to the top three registered participants who have the highest total dollar amount (minimum $200) of donations made to APFED in their honor by October 24, 2020.

“The COVID-19 pandemic is not stopping our community, patients, and their loved ones from funding critical research efforts and safely raising awareness in their communities,” shared APFED Executive Director Mary Jo Strobel. “Every participant has an opportunity to make an incredible impact in our fight to end eosinophil-associated diseases, just by getting moving during our Hike for HOPE weekend.”

APFED’s participation in Charity Miles is made possible thanks to the generous support of Takeda.

To register for the virtual Hike for HOPE event, learn more, or make a donation, visit: apfed.org/events/hike-for-hope/.

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. https://apfed.org/

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APFED Will Host Virtual Patient Education Conference on Eosinophil-associated Diseases, July 9-11, 2020

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

EOS Connection 2020 offers the latest in science and research on eosinophil-associated diseases, practical management strategies, and an opportunity to connect with others

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) will host its 18th Annual Patient Education Conference on Eosinophil-Associated Diseases using an all-virtual format for the first time.

EOS Connection 2020 will leverage state-of-the-art virtual meeting technology to provide a full conference experience, bringing together patients, caregivers, families, advocates, healthcare providers, researchers, and education partners to learn and network in an online 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.

The EOS Connection 2020 virtual conference hall will be open on July 9, 10, and 11 from 11:30 A.M. to 3:45 P.M. Eastern Time. Presentations from expert speakers will include diagnostic and treatment advances in eosinophilic gastrointestinal disease (EGID), dietary management, and coping, as well as presentations on other rare eosinophil-associated diseases, such as eosinophilic fasciitis and episodic angioedema with eosinophilia.  Attendees have opportunities to participate in live Q&A.

APFED’s conference this year will break new ground in online education and engagement for the eosinophil-associated disease community. Closely replicating a physical event, the program will enable attendees to attend talks in the theater, participate in live Q&A, connect in the Networking Lounge, explore presentations in the poster hall, and engage with partners and collaborators in the exhibit hall where additional resources may be found at the booths.

“Due to the COVID-19 pandemic, we are replacing our live in-person event and are embracing the opportunity to offer a virtual education experience in a fresh and innovative way,” said APFED’s Executive Director Mary Jo Strobel. “We are grateful for the time, effort, and flexibility of the presenters and our partners, and to our collaborators at the University of California San Diego and the Consortium of Eosinophilic Gastrointestinal Disease Researchers, as well as the many investigators who will be presenting their work at EOS Connection 2020. We look forward to welcoming our community members to our online event.”

Complimentary admission to EOS Connection 2020 is offered to all APFED members, including its free subscribers and new joiners.

EOS Connection 2020 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partner EleCare®; Platinum Partners AstraZeneca, Sanofi Genzyme, and Regeneron; and Gold Partners Adare Pharmaceuticals, Allakos, Bristol Myers Squibb, GlaxoSmithKline, Neocate®, and Takeda.

To register for EOS Connection 2020, please visit: apfed.org/eosconnection2020.

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. https://apfed.org/

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A Statement from APFED

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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

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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!

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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/.