All posts by Amity Westcott-Chavez

Rare Disease Day 2020

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.

  • Visit the U.S. Rare Disease Day website to learn how to get involved and download resources at us. For global activities, visit  rarediseaseday.org.
  • “Show Your Stripes” with APFED’s Rare Disease Day Facebook Frame in honor of this year’s event theme and to raise awareness of eosinophil-associated disease!
  • Participate in a special Rare Disease Day event at the National Institutes of Health in Bethesda, Maryland on February 28, 2020, from 8:30 a.m. to 4:30 p.m. This free event will feature speakers and panelists discussing topics such as personalized medicine, shortening the journey to diagnosis, and NIH clinical trial resources, and much more. Get complete details and to register to attend onsite or participate via webcast. APFED is excited and honored to have been a part of the planning committee for this special event!

$7 Million Match for #GivingTuesday on 12/3!

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.

  • Donations are matched dollar for dollar on a first-come, first-served basis until $7,000,000 USD in eligible donations are made on Facebook.
  • Any US-based 501(c)(3) nonprofit eligible to receive donations on Facebook can be matched.
  • Facebook will match up to a total of $100,000 per nonprofit organization.
  • Each donor can have up to $20,000 in eligible donations matched on GivingTuesday.
  • Facebook covers processing fees so that when you donate using Facebook’s payments platform to a nonprofit organization, 100% of your donation goes to support the cause you care about.

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!

  • Make a Facebook Donation and Encourage Others to Do the Same. All donations to APFED’s Facebook on December 3rd could be matched! Mark your calendar, set your alarm, and make your donation early on December 3rd. Matching starts at 8:00 AM EST!
  • Host a Facebook Fundraiser on Behalf of APFED! Visit fb.com/fund/APFED/ to get started. Share your fundraiser with your friends and family and ask them to donate and share your #GivingTuesday fundraiser. Don’t forget to share your fundraiser early on #GivingTuesday to maximize those matching dollars!

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!

Highlights from the 2019 NORD Summit

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.

Mary Jo Strobel, APFED and Sarah Chamberlin, National PKU News both work in support of the Medical Nutrition Equity Act. Annual NORD Summit, at Marriott Wardman Park, Washington, D.C., on Monday, October 21, 2019. John Boal Photography
Annual NORD Summit, at Marriott Wardman Park, Washington, D.C., on Monday, October 21, 2019. John Boal Photography

 

2019 NASPGHAN Outstanding EGID Abstract Award Recipients Announced

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.

Dr. Anna Henderson with Dr. Ben Gold, President Elect of NASPGHAN
Dr. Kelly Whelan with her abstract

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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Steven Page Trio Headlines NYC Benefit Concert for APFED on 11/7

“Charit-EoE Concert for a Cure for Eosino…what???” will help fund research for eosinophil-associated diseases

(Atlanta, GA)— The Steven Page Trio is set to perform at a special benefit concert on Thursday, November 7 at TGA NYC in New York City, with doors opening at 7:00 p.m.  Steven Page is a founding member of the popular rock sensation Barenaked Ladies and a 2018 Inductee to the Canadian Rock & Roll Hall of Fame.

Arlene and Lance Steinberg are chairing this evening of music and fundraising to benefit APFED’s HOPE on the Horizon Research Program. The Steinbergs have a son who has been diagnosed with eosinophilic esophagitis (EoE), a chronic allergic condition of the esophagus that is believed to be triggered by allergies to food. The condition can range from mild to severe symptoms, and left untreated, can cause the esophagus to stiffen and narrow, causing difficulty swallowing.

Tickets to the benefit concert may be purchased here for a cost of $150 per person. The ticket price includes three hours of cocktails, light fare, a gift bag filled with a variety of items from generous sponsors, and an unforgettable evening of music, community, awareness, and fun.

Proceeds from the concert will benefit APFED’s HOPE on the Horizon Research Program, which awards grants to investigators who initiate new projects relevant to eosinophilic esophagitis (EoE) and other eosinophil-associated diseases.

“I met with the Steinberg family in 2016. Before then, I knew nothing about eosinophil-associated diseases,” shared Steven Page.  “I learned very quickly how devastating they can be. I also learned how tightly knit the community of families who are living with these disorders are, and I am honored to be able to support them with music.”

“We saw a need to bring back our event for a third year, and we are delighted that Steven Page and his trio will be headlining,” said Arlene Steinberg. “We’re thankful to the Steven Page Trio for sharing an amazing night of music with this community and for the community’s continued support of APFED and its groundbreaking research program.”

“Over the years, we’ve truly valued this unique concert experience that the Steinbergs have hosted to benefit APFED’s research program. Our entire community is grateful for how their efforts have advanced our understanding of these rare diseases,“ added APFED Executive Director Mary Jo Strobel. “This event truly creates hope through the new projects that it makes possible.”

APFED appreciates the support of the following Double Platinum sponsors: Brandt, Steinberg, Lewis & Blond LLP; Sunshine Charitable Foundation; Tito’s Handmade Vodka; and TGA NYC.

About American Partnership for Eosinophilic Disorders (APFED)

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 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 Eosinophilic Esophagitis (EoE)

Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.

EoE is a subset of a group of rare, chronic conditions known as eosinophil-associated diseases. When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease. Due to the lack of information or awareness of these diseases, patients may suffer for years trying to obtain an accurate diagnosis and appropriate treatment.  Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments.

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