APFED Blog: We’ve Hit the Ground Running!

January 30, 2016

APFED Happenings  – January, 2016
By Mary Jo Strobel, Executive Director

We have hit the ground running in 2016! One of the initiatives we are launching this year is this blog, so that we can share with you each month the work APFED is doing in support of families who have eosinophil-associated diseases.

This month, APFED’s Board Chairman Dr. Prad Tummala and I participated in a review committee to discuss and score research grant applications that are being considered for the 2016 HOPE APFED/AAAAI Pilot Grant Award. This grant, equally supported by both APFED and the American Academy of Allergy, Asthma & Immunology (AAAAI), awards $140,000 to the highest-scored application to foster development of new research that is likely to have high impact and could lead to future external funding (for example, preliminary data gathered as the result of this grant could help the applicant apply for federal funds in the future).

There were many exciting applications presented, and each year it is tougher and tougher to select only one.  After thorough and lively discussion, the committee agreed on a recommendation to make to a secondary review panel that will weigh in on the applications. The grant recipient will be announced at the AAAAI annual meeting in Los Angeles in March. Stay tuned to our website for the announcement!

Each month APFED BOD members Kathleen Sable, Wendy Book, Victoria DeLano, and Denise Mack, and I participate in various committee meetings and tasks related to the Consortium of Eosinophil Gastrointestinal Disease Researchers (CEGIR). APFED has taken the lead in developing patient-friendly communications about CEGIR clinical trials for the consortium and other patient advocacy groups to use to educate patients. We expect to have approval to release these materials in the coming weeks. To stay up-to-date with trial enrollment information, please take a moment to enroll in the RDCRN-CEGIR Contact Registry, and/or follow APFED on social media or sign up for our free e-newsletter.

In the area of education, I have been working with various patients and experts in the field of “lower EGIDs” to produce a new brochure to educate readers about eosinophilic colitis, eosinophilic gastritis, and eosinophilic gastroenteritis. We expect to have it available for distribution in the coming weeks. Stay tuned!

To help patients who are looking for information about Eosinophilic Myalgia Syndrome (EMS), APFED has teamed up with the National Eosinophilic Myalgia Syndrome Network to produce information about this disease for inclusion on APFED’s website. We are excited to have launched this new page to our site this month.

Finally, as you move in to 2016, be sure that you have these dates marked on your calendar:

  •    National Eosinophil Awareness Week (NEAW), May 15-21. This special week is near and dear to APFED – nine years ago, we successfully led the efforts to have NEAW recognized by the U.S. House of Representatives, and on May 15, 2007 H. Res. 296 was officially passed! Read more about NEAW and the resources to help you educate others.
  •   EosConnection 2016: APFED’s 14th Annual Patient Education Conference on EGIDs, July 8-9 in San Diego, CA. We expect to have online registration open in early March. To connect in advance with the families who are planning to attend the conference, be sure to join the APFED conference Facebook group!

For other local education and awareness events, check out our Community Partner Events section.

Happy new year, and thanks for your ongoing support!

Mary Jo