Eos Connection Online Support Community: There’s an App for That!
Learn and Connect with Others Anywhere, Anytime!
We’re excited to share the availability of a new mobile app for our Eos Connection online support community on Inspire! The app provides an even better experience so that you can connect with others who understand first-hand the challenges of eosinophil-associated disease. Download on your app-friendly device at Inspire.com/app.
The rare disease patient community will come together in unity to celebrate Rare Disease Day on February 29, 2020 (leap year, which is the rarest day of all)! This special day is focused on raising awareness among the general public and decision-makers about rare diseases and their impact on peoples’ lives.
This year, in support of #GivingTuesday on December 3, 2019, Facebook is matching up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits.
Facebook’s match for GivingTuesday 2019 begins at 8:00 AM Eastern Time (5:00 AM Pacific Time) on Tuesday, December 3, 2019.
How Can You Help APFED?
All #Giving Tuesday funds raised for APFED on Facebook will go toward our Give the Gift of HOPE campaign, which will help fund APFED’s Hope on the Horizon Research Program, as well as vital support, education, and advocacy initiatives!
Don’t miss out on this incredible fundraising opportunity to double your donation and fundraise to help those living with eosinophil-associated diseases (EADs).
More About Facebook Fundraisers
Nonprofit fundraisers let you, our APFED supporters, raise money quickly and easily on Facebook. You can set up a dedicated page here to share why you support APFED, while also raising awareness of EADs.
Whether you’ve volunteered, donated, or you have a personal story to share, tell your friends and family why finding a cure for eosinophil-associated disease is important to you.
Your friends and family can donate in a few clicks without leaving Facebook, making it easier for you to collect donations and reach your fundraising goal.
Learn more ways to give on APFED’s Give the Gift of HOPE campaign page. And don’t forget to mark Tuesday, December 3rd on your calendar for #GivingTuesday!
APFED was honored to receive a scholarship to attend the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit that was recently held in Washington, D.C. The two-day conference enabled attendees to engage with leaders on key issues of importance to the rare disease community.
Sessions included but were not limited to topics specific on patient-focused drug development, gene therapy, drug pricing, patient registries, social media platforms, and how emerging technology can advance rare disease. The agenda featured speakers from the FDA, NIH, patient advocacy groups, industry, and academia.
Several rare disease research posters were displayed and exhibitors engaged with attendees throughout the meeting. The Summit also provided the means for patient advocates to connect and offer support to one another and to share information.
“It was an inspiring meeting and the speakers brought so much to the table,” said APFED Executive Director Mary Jo Strobel, who attended the event. “Some of my key takeaways from the Summit are that stakeholders are keeping what is best for the patient top-of-mind, and that patient voice and perspective, as well as collaboration with patient advocacy groups, are critical to advance diagnostics and treatments.”
You may read more about the Summit in this post-event wrap-up from NORD,
The 2020 NORD Summit is scheduled to take place next October 8-9 at the Marriott Wardman Park in Washington, DC.
Award recognizes two best-scoring abstracts focused on eosinophilic gastrointestinal disease
(Atlanta, GA)— The American Partnership for Eosinophilic Disorders (APFED) has announced the two recipients of the 2019 NASPGHAN Outstanding EGID Abstract Awards. The awards were presented at the annual meeting of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) held in Chicago. NASPGHAN is the professional society for pediatric gastroenterologists in North America, serving clinical gastroenterologists and scientists from the U.S., Canada and Mexico.
The NASPGHAN Outstanding EGID Abstract Awards recognize the best-scoring abstracts on eosinophil-associated gastrointestinal diseases (EGIDs) and the funds help offset travel costs to attend the meeting and present their finding to their peers.
The 2019 NASPGHAN Outstanding EGID Abstract Award recipients are Dr. Kelly Whelan of Fels Institute for Cancer Research & Molecular Biology at Temple University in Philadelphia, PA, for her abstract titled, “Interleukin-13-Mediated Release of Mitochondrial DNA From Esophageal Epithelial Cells: A Novel Noninvasive Biomarker for Eosinophilic Esophagitis,” and Dr. Anna Henderson of Cincinnati Children’s Hospital for her abstract titled, “Monitoring Eosinophilic Esophagitis Disease Activity with Blood Eosinophil Progenitor Levels.”
Dr. Whelan’s team set out to evaluate mitochondrial content in esophageal biopsies and circulating mitochondrial DNA in serum in people with active eosinophilic esophagitis (EoE) and in those who did have EoE (normal pathology). This was to help determine the significance of mitochondria in EoE pathobiology and disease management. The results of this research showed increased mitochondria in esophageal epithelium of active EoE patients. These findings demonstrate that EoE features increased mitochondria in esophageal epithelium and peripheral circulation. While more research is needed, measuring mitochondrial DNA may serve as a non-invasive biomarker for EoE.
Dr. Henderson’s team aimed to determine whether eosinophil progenitors in the blood could be used as a biomarker to identify pediatric patients with active EoE. In a prospective observational pilot study, peripheral blood samples, symptom history, and laboratory data were collected from pediatric patients undergoing endoscopy for evaluation of EoE on dietary therapy at Cincinnati Children’s Hospital Medical Center. Their findings suggest that blood eosinophil progenitors levels may be used as a biomarker to detect active EoE disease in patients undergoing food trials and potentially reduce the need for repeated endoscopies. More research is needed to investigate the effects of antihistamines and swallowed steroids on eosinophil progenitors levels in the blood, as well as longitudinal studies to assess the ongoing performance of this potential biomarker.
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
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