New surveys for and research interview opportunities have been posted for patients with eosinophilic gastrointestinal diseases. Learn more at https://apfed.org/take-action/surveys/ and please consider participating in an interview or survey!
All posts by Mary Jo Strobel
New CEGIR Site Announced
Contacts: Munazza Noor, Baylor College of Medicine, Phone: (832)-824-0939, E-mail: munazza.noor@bcm.edu
Mary Jo Strobel, American Partnership for Eosinophilic Disorders, Phone: (713)-493-7749, Email: mjstrobel@apfed.org
PRESS RELEASE
For Immediate Release
(ATLANTA, GA)—The American Partnership for Eosinophilic Disorders (APFED) and Baylor College of Medicine are excited to announce that the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) has recently added Baylor College of Medicine (BCM)/Texas Children’s Hospital (TCH) in Houston, Texas as the newest CEGIR site. BCM/TCH is open to enroll patients (ages 3-100) into the CEGIR 7801 Study: OMEGA—A Prospective, Multicenter Study to Compare and Validate Endoscopic, Histologic, Molecular and Patient-Reported Outcomes in Pediatric and Adult Patients with Eosinophilic Esophagitis (EoE), Gastritis (EG) and Colitis (EC)*.
EoE, EG and EC are eosinophil-associated diseases (EADs). EADs are chronic inflammatory disorders characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific places in tissues, organs, and/or bloodstream, which in turn causes inflammation and damage. Specifically, EoE, EG and EC are Eosinophilic Gastrointestinal Diseases (EGIDs) which means that there are elevated levels of eosinophils in the gastrointestinal tract.
CEGIR is conducting the OMEGA study because they want to learn more about EGIDs. As part of that goal, one area of study will compare how well a patient feels—their symptoms—with what the tissue samples look like under a microscope. The study is designed to give researchers and clinicians a better idea of the correlation of symptoms to the tissue, help them find clues about the disease in the tissue samples and assess how this information could be used in the future to help guide diagnosis and treatment plans.
If you would like to learn more about the OMEGA study and see if you may be eligible to participate, please visit: https://www.rarediseasesnetwork.org/cms/cegir/7801 . If you are interested in seeing if you can participate in this study at Baylor College of Medicine/Texas Children’s Hospital in Houston, Texas, please contact Munazza Noor using the phone number and/or e-mail address listed above.
*The OMEGA study is currently only enrolling patients with EG and/or EC and has been closed to EoE patients. Patients with a diagnosis of Eosinophilic Gastroenteritis (EGE) or Eosinophilic Duodenitis (ED) can contact a study coordinator for additional eligibility details.
About American Partnership for Eosinophilic Disorders (APFED)
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 Baylor College of Medicine
Baylor College of Medicine (www.bcm.edu) in Houston is recognized as a premier academic health sciences center and is known for excellence in education, research and patient care. It is the only private medical school in the greater southwest and is ranked 16th among medical schools for research and 5th for primary care by U.S. News & World Report. Baylor is listed 21st among all U.S. medical schools for National Institutes of Health funding and number one in Texas. Located in the Texas Medical Center, Baylor has affiliations with seven teaching hospitals and jointly owns and operates Baylor St. Luke’s Medical Center, part of CHI St. Luke’s Health. Currently, Baylor trains more than 3,000 medical, graduate, nurse anesthesia, physician assistant and orthotics students, as well as residents and post-doctoral fellows. Follow Baylor College of Medicine on Facebook (http://www.facebook.com/BaylorCollegeOfMedicine) and Twitter (http://twitter.com/BCMHouston).
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.rdcrn.org/cegir
$7 Million Match for #GivingTuesday on 11/27!
This year, in support of #GivingTuesday on November 27, 2018, Facebook is partnering with PayPal to match up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits.
- The matching dollars are available to any US-based nonprofit.
- Each nonprofit and donor are eligible to be matched up to $50,000.
- Facebook and PayPal will match donations starting at 8:00 AM EST and will continue matching donations made to nonprofits until the $7M match runs out.
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 facebook.com/APFED/ on Nov. 27th could be matched! Mark your calendar, set your alarm, and make your donation early on Nov. 27th. 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, November 27, 2018 on your calendar for #GivingTuesday!
Thanksgiving Recipes for an Elimination Diet
Food-focused holidays like Thanksgiving can be challenging for those on an elimination diet. Leading up to Thanksgiving, we’re sharing recipes from the APFED Elimination Diet Cookbook: Tips, Strategies, and Recipes from the EGID Community. What are your go-to recipes for Thanksgiving on an elimination diet? Please share with us on Facebook, Twitter or Instagram!
ACG 2018 Annual Scientific Meeting and Postgraduate Course in Philadelphia
The American College of Gastroenterology (ACG) is a professional organization for clinicians who care for gastroenterology patients. APFED participates in this annual meeting by providing information about eosinophil-associated diseases to attendees, and arming them with resources to help their patients.
This year’s meeting featured more than 30 research abstracts and lectures that described study findings or case reports related to eosinophilia. We’ve included just a few highlights below, along with links to find more information.
- Siglec-8, a novel selective target for EGIDs, is found on eosinophils and mast cells. Biopsies from patients diagnosed with EG and EoE show a significant increase in eosinophils and mast cells. Mast cells were elevated to the same extent as eosinophils in these patients. In EG/EGE mouse models, anti-Siglec-8 monoclonal antibody significantly reduced the number of eosinophils and mast cells in the stomach, small intestine, and blood compared to control models. (https://bit.ly/2E9ARAa)
- Recent meta-analysis confirms that proton pump inhibitor (PPI) usage is associated with an increased risk of bone fracture, therefore, clinicians will need to weigh the risk and benefits of using these medications long term. (https://bit.ly/2RFiw0u)
- In a poster abstract entitled, “Documenting the Journey of Patients with Eosinophilic Esophagitis and Its Impact on Their Caregivers”, researchers describe results from structured community interviews in which APFED helped recruit participants. Patients with EoE and their caregivers commonly reported the following symptoms prior to an EoE diagnosis: abdominal pain (100%), regurgitation/reflux (64%), avoiding/refusing food (64%), and vomiting (64%). Adults commonly reported pain/difficulty when swallowing food (90%), chest pain (75%), and feeling an obstruction in the throat (75%). The majority of caregivers and adult patients indicated feelings of worry or anxiety, and reported that social activities were affected by EoE.
- Researchers at Northwestern University Feinberg School of Medicine in Chicago presented a poster outlining their retrospective chart review for adults with EoE who had undergone esophageal dilation for their EoE symptoms. The data showed that the average number of dilations per patient was 2.87 ± 2.62 dilations. The results of the center’s experience with esophageal dilation in EoE showed that dilation was a safe procedure and that the majority of strictures in EoE occur in the distal esophagus. The authors speculate that factors such as gastroesophageal reflux may influence stricture formation in EoE.
A list of all poster abstracts presented at ACG this year can be found online at https://bit.ly/2QB7FUf. Use the keyword search box to help you navigate the research terms that interest you.
To follow along with news from ACG, visit http://acgblog.org/