All posts by Mary Jo Strobel

New NIH-funded Research Network Focuses on Eosinophilic Gastrointestinal Diseases

Press Releases, What's New

Patient advocacy group offers full support

Atlanta, GA. (October 8, 2014) – The American Partnership for Eosinophilic Disorders (APFED), a patient advocacy group based out of Atlanta, is pleased to announce its support of new federally funded research that will focus on eosinophilic gastrointestinal diseases (EGIDs).

Eosinophilic-associated diseases are chronic inflammatory disorders characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places in the digestive system, tissues, organs, and/or blood stream, which causes inflammation and damage. When inflammation is in the esophagus, the condition is known as eosinophilic esophagitis. When it is in the stomach, the condition is called eosinophilic gastritis. When it is in the colon, it is known as eosinophilic colitis.

The 5-year, $6.25 million grant, made possible through awards by the National Institutes of Health to expand the Rare Diseases Clinical Research Network, will allow for the formation of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) to research eosinophilic and allergic disorders and to train investigators in how to conduct clinical research. CEGIR will focus on research projects involving patients with eosinophilic esophagitis, gastritis, and colitis. The involvement of patients from the beginning is crucial to the success of the Consortium, therefore a unique, key component of the grant includes CEGIR’s collaboration with patient advocacy groups to ensure the needs of the patients are recognized and met.

The American Partnership for Eosinophilic Disorders (APFED), the world’s largest not-for-profit patient advocacy group dedicated to education, advocacy, awareness, and research for eosinophil-associated diseases, is working closely with CEGIR to address the clinical problems of most importance to patients and their families. APFED has committed to full participation in CEGIR, including financial support.

To further strengthen support for research and advocacy efforts pertaining to eosinophil-associated diseases, APFED led efforts to organize the Coalition of Eosinophil Patient Advocacy Groups (C-Eos, www.c-eos.org), which was established in May, 2014.

Marc Rothenberg, MD, PhD, director of the Cincinnati Center for Eosinophilic Disorders at Cincinnati Children’s will serve as principal investigator of the NIH grant, and Glenn T. Furuta, MD, director of the Gastrointestinal Eosinophilic Diseases Program at Children’s Hospital Colorado and professor of pediatrics at the University of Colorado School of Medicine, will act as administrative director and site investigator. Investigators from additional sites will also participate in CEGIR including Bern University Switzerland, Children’s Hospital of Philadelphia, Lurie Children’s Hospital, the National Institutes of Health, Northwestern University, Rady Children’s Hospital, Riley Children’s Hospital, Tufts University, and the University of North Carolina.

By working together collaboratively, these sites have access to a comprehensive database of more than 8,000 patients.

“These are painful, lifelong diseases that make it difficult or impossible for individuals to eat many or all foods,” says Rothenberg. “Individuals with these diseases often have to fuel their bodies by drinking costly formulas. We will collaborate with researchers, patients and patient advocacy groups to better understand, treat and educate about these diseases.”

“CEGIR presents an outstanding opportunity for experts from across the world to perform collaborative clinical research and to train a new generation of investigators,” Furuta said. “Research will be guided by patient advocacy groups and results from these studies will bring transformative changes to the care of patients with EGIDs.”

“We applaud the NIH for recognizing the need for improved diagnostics and therapeutic treatments for patients with eosinophil-associated diseases and for allocating critical resources to this Consortium,” said APFED President Dr. Wendy Book. “APFED has long advocated for research of these diseases and it is a dream come true to have the nation’s most esteemed investigators come together to partner on efforts in tandem with patient advocacy groups. We are honored to collaborate with the researchers and NIH institutes on this landmark project and we embrace the opportunity to work with other patient advocacy groups and with CEGIR to bring about a greater understanding of these diseases and the patients who develop them.”

Learn more: NIH funds research consortia to study more than 200 rare diseases

Enroll in the CEGIR Contact Registry

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

Zach fights back – living with Eosinophilic Esophagitis

In the News, What's New

BOYNTON BEACH, Fla. – Zach Blair is among the most competitive 11 year olds on the baseball field, and on the basketball court, which is incredible because he has a disease so rare you would struggle to pronounce it.

Eosinophilic Esophagitis is a digestive disease caused by a toxic white blood cell, and most foods can cause severe pain and damage to Zach’s esophagus.

Zach gets his energy from formula, which is his primary food source.

“There’s not enough research and there’s not enough knowledge,” says Zach’s mother Susan, “they just know that currently there’s no cure.”

Zach says he gets tired of drinking the formula, and that it’s hard when he sees his friends are eating all of the foods he used to like. He puts all his problems behind him by playing his favorite sports, from basketball to soccer to baseball.

“I feel he does an amazing job just trying to change his attitude, says Susan, “keeping himself busy and find himself something he likes to pursue.”

Zach is one of the stars of his Boca Raton little league team , making friends along the way, and being an 11 year old boy.

“Mostly what I love about sports is that it helps me get over my disease, ” says Zach, “it’s really frustrating because I want to know how to cure this disease.”

– John Evenson (source CBS 12)

In My Shoes: Courageous ill child is inspiring

In the News

No one expects a healthy child to develop an incurable disease. I know I didn’t.

Like any first-time mother, I was excited when Joshua first started eating solid food. He readily downed diced carrots, peas, bananas and potatoes.

But when he reached 10 months, mealtime became mayhem. He resisted, gagged on and vomited basic foods. Reading baby books calmed my nervousness. It was just a little spit up, right?

But the gagging worsened. I painfully watched him lose the ability to swallow even a teaspoon of pureed food. Eating became dreaded and painful for Joshua, my husband and me. We held our breath when he swallowed, praying the food would stay down. He needed the nutrients. What else could we do?

Joshua also developed problems with breathing and became allergic to grass, pollen and trees. He apparently inherited my asthma gene. Round-the-clock nebulizer treatments seemed excessive and did not really help his wheezing.

When I returned to the workforce after his first birthday, I felt an inner struggle. I worried about whether a caregiver would be as sensitive as I was to his wheezing and flare-ups.

At the onset of symptoms, I grabbed Joshua’s emergency room bag and a carryout dinner for the all-expense-paid trip to the emergency room. This, not the career fast lane, became normal.

Another family gene, eczema, also took over his innocent body. Perpetual scratching led to pulling his hair out.

Lathering him with ointments and oils only modestly helped improve his dry skin. Doctors prescribed steroid creams that helped slightly. But how would steroid medication affect his growth?

We saw these ailments, and doctors treated them, as separate complaints. By this point, Joshua tolerated only a handful of “safe” foods and continued to fall behind his age group on weight gain.

I literally became Dr. Google, moonlighting on medical websites and trying to find answers about his overlapping conditions.

My sleuthing paid off when I stumbled across a disease that included allergies, eczema and vomiting. Since the most pressing condition was Joshua’s inability to swallow, I sought out a gastroenterologist.

Within days, he performed a biopsy and diagnosed Joshua with eosinophilic esophagitis. Known as EOE, this disease cripples the immune system. Infection-fighting white blood cells called eosinophils attack the body and the esophagus. Having EOE means that Joshua is allergic to most food. This results in swelling and irritation throughout his gastrointestinal tract.

Other manifestations include the eczema and allergies. Researchers do not know what causes EOE. While it does not appear to be genetic, some predetermining factors are asthma and allergies.

Joshua started a liquid amino acid-based formula, Neocate, considered a standard nutrient for those diagnosed with EOE. In more severe cases, doctors recommend feeding-tube therapy. Joshua is still under evaluation for a feeding tube.

I was relieved to know that Joshua’s condition had a name. At the same time, I was overwhelmed that he had a disease with no boundaries or cure.

In addition to the daily unexpected symptoms of EOE, what concerns me is that children elsewhere may suffer from these ailments and not know it.

Joshua is now 2, and his courage inspires me. Despite his three-page résumé of medical terminology, reactions, medications and hospitalizations, and more than a dozen caregivers, he powers through it.

And that for me is food for thought.

Dawn McCoy of Chesterfield County is a writer and consultant.

– Dawn McCoy (source richmond.com)

APFED’s Hope on the Horizon Walks

Announcements

Proceeds from all APFED’s Hope on the Horizon Walks will support APFED’s Hope on the Horizon Research Fund, which provides grants to investigators to pursue unique research ideas that could lead to less invasive diagnostic measures and more effective treatments for those suffering from eosinophil associated diseases. Click here to learn more about HOPE grant recipients and their research projects.

Join us May 21, 2016 in St. Louis, Missouri for APFED’s HOPE on the Horizon Walk.
Location: Tilles Park and the Gloria Rogers Shelter 

More Info and Registration Coming Soon!

Additional questions? Email jforrest@apfed.org

 

Join us May 21, 2016 in Kingsville, MD for APFED’s HOPE on the Horizon Walk.
NEW LOCATION

Historic Jerusalem Mill Village
2813 Jerusalem Road
Kingsville, MD 21087
9AM – Noon
More Info and Registration Coming Soon

Additional questions? Email jforrest@apfed.org

 

APFED’s Hope on the Horizon Virtual Walk
No Hope on the Horizon Walk in your area? You can still get involved and support research of eosinophil associated diseases by participating in our Virtual Walk!

More Info
Register Online
Pledge Form
Donate

Smoking is prohibited at this event. For event notices and information, visit our Walk Facebook page at https://www.facebook.com/HopeOnTheHorizonWalks.

Interested in SPONSORING or HOSTING one of APFED’s Hope on the Horizon Walks?
Please contact fundraise@apfed.org for more information.

Patient Advocacy Groups Unite in Support of Those with Eosinophil-Associated Diseases

Press Releases

New Coalition Launches during National Eosinophil Awareness Week
(Atlanta, GA)  — To support patients of eosinophil-associated diseases and to advance key issues of importance to this population, patient advocacy groups from around the world have united together to form the Coalition of Eosinophil Patient Advocacy Groups (C-EOS). 
 
The mission of C-EOS is two-fold:
· To encourage, promote, and support scientific research toward improved treatment, medical care, and cures of eosinophil-associated diseases and their complications.
 
· To educate the public, patients, families, policymakers, healthcare professionals, and other stakeholders about eosinophil-associated diseases and resulting problems for these patients, including the need for better diagnostic testing, further research for treatments, and a cure.
Eosinophil-associated diseases occur when levels of eosinophils, a type of white blood cell, are elevated in certain areas of the body. Eosinophils play an important role in the immune system, helping to fight off certain types of infections and parasites. These cells respond to triggers, such as food or airborne allergens, by releasing toxins into the affected area. The diagnosis depends on where the eosinophils cause damage. Subsets include eosinophilic gastrointestinal disorders (esophagus, stomach, or intestines); eosinophilic granulomatosis with polyangiitis, aka Churg-Strauss Syndrome, (lungs, sinuses, heart, and various organ systems); and hypereosinophilic syndrome (blood and organs).
 
Eosinophilic gastrointestinal disorders often render the patient unable to tolerate certain food proteins. Treatments for these disorders include restricted diets or total food elimination, requiring patients to live off an elemental formula (taken either orally or via a feeding tube), and/or steroid treatments.
 
Due to the lack of information or awareness of these diseases, patients 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.
 
“Eosinophil-associated diseases are chronic, rare diseases that significantly impact quality of life,” said Mary Jo Strobel, Executive Director for the American Partnership for Eosinophilic Disorders, a C-EOS participant. “As an organization dedicated to serving patients and families who live with these diseases, we are thrilled to join C-EOS and are excited to see so many organizations work together in support of patients and researchers who are paving the way to a cure." 
 
C-EOS launches during National Eosinophil Awareness Week, May 18-24. For more information about the coalition and to see other participating organizations, please visit www.c-eos.org.

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