All posts by Mary Jo Strobel

Multi-Site Clinical Studies are Enrolling

Announcements, Research, What's New

Longitudinal 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)

Ages 3-65

OMEGA Recruitment flyer on background Sep2016

Diet Study: Adults

SOFEED: Six Food vs One Food Eosinophilic Esophagitis Elimination Diet followed by Swallowed Glucocorticoid Trial

Ages 18-60

What is the most effective diet to treat EoE in adults? Could a less restrictive diet be as effective? The SOFEED clinical trial seeks to find answers to this question and more. Do you qualify to participate?

  •    Visit the CEGIR website to learn more about the SOFEED Study

SOFEED-WebGraphicKey6-15-16

Diet Study: Pediatrics

Ages 6-17

Eosinophilic Esophagitis (EoE) Intervention Trial-Randomized 1 Food Elimination vs. 4 Food Elimination Diet followed by Swallowed Glucocorticoids

What is the most effective diet to treat EoE in children? Could a less restrictive diet be as effective? A new clinical trial open to children ages 6-17 seeks to find these answers. Learn more at rarediseasesnetwork.org/cms/pcori/.

  •     Learn more about this study with a shareable flyer: Study Flyer
  •     Hear from patient advocates about the impact of this study in this video.

dietstudyflier

 

PCORI Locations Map 011817
Enrolling locations

 

Give the Gift of HOPE

APFED Blog

Please think of APFED as you plan your end-of-year charitable contributions. Our programs and services exist only because you have supported them and have encouraged others to do the same:

•    Hope on the Horizon Research Fund
•    School advocacy how-to, templates, and support
•    Advocacy for state and federal mandates on insurance coverage of medical foods
•    Website resources and online community
•    Resources for health care providers
•    Information for support group leaders
•    Phone and e-mail support

If APFED has helped you and your family, or has helped your patients, please consider a tax-deductible gift so that we may continue our important work. Every dollar matters as we progress toward a cure.

Thanks in advance for your contribution and for helping APFED to be there tomorrow for the patients and families who need us! Learn more about the impact of your contribution in APFED’s 2016 Champions for Change Progress Report.

APFED to Kick Off 14th Annual Eos Connection Conference in San Diego for Those Living with Eosinophilic Gastrointestinal Disorders (July 8-9, 2016)

In the News, Media Info, Press Releases, What's New

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce that its 14th Annual Patient Education Conference on Eosinophilic Gastrointestinal Disorders (EGIDs) will be held this week in San Diego, CA on July 8-9. APFED hosts this patient-focused conference as a chance for patients, families, caregivers, community advocates, and leading experts from across the United States to come together in one place for education, networking, insight, and inspiration.

Held at the Sheraton San Diego Hotel & Marina, the conference will feature roughly 25 educational and experiential sessions geared toward the Eos community, from recently-diagnosed patients to veterans of EGID management, as well as programs for children and teens.

Eos Connection attendees will learn the latest advancements in the diagnosis and treatment of EGIDS, as well as promising research on the horizon. In addition, attendees will get practical tools to implement in the daily management of EGIDs, as well as strategies to help cope with the physical and emotional challenges of living with EGIDs. The conference is also a time for individuals and families to meet and build a support network with others who are managing these diseases. Social activities will include Family Fun Day at the USS Midway® Museum on July 7 and APFED’s HOPE on the Horizon Walk on July 8 to raise funds for EGIDs research.

Eosinophilic-associated diseases (EADs) 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. The most common of these diseases are EGIDS, which affect the gastrointestinal tract and often render the patient unable to tolerate certain food proteins.

“This year’s conference offers a robust program designed to help patients and families effectively manage EGIDs at any stage of their journey,” said APFED Executive Director Mary Jo Strobel. “We are grateful to welcome a remarkable group of speakers who are lending their time, knowledge and guidance at the conference to help benefit our patient community. Their insight, coupled with the sense of hope and community that the conference creates, empowers those affected by EGIDs to take on the challenges presented by these diseases.”

For those who cannot attend the conference onsite in San Diego, APFED is excited to offer a virtual registration option. On Saturday, July 9, virtual attendees may participate online via webcast in the conference’s general session and submit questions for conference speakers. This option also allows support groups and clinics to host their own “viewing parties” for the cost of a single registration fee.

Eos Connection 2016 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partner EleCare®.

Learn more about the conference and ways to register at apfed.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

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Get Out and Go! EGIDs and Summer Travel

APFED Blog, What's New

Summer trips with an EGID can be challenging. We asked for suggestions to ease travel from Colette Martin, The Allergen-Free Baker, and Laura Dean, MA, RD, CD, an EoE and GI Clinic Dietitian with Riley Hospital for Children at Indiana University Health.

Always Travel with Safe Foods: Don’t expect to be able to find a safe snack when you are stuck in an air-port or on an airplane. Always bring more than you think you will need. Crackers, cookies, and fruit all travel well.

Bring Breakfast: Breakfast can be especially difficult for those avoiding the top food allergens and EGID triggers. Bring something that can be made easily in a hotel room. For example, muffins require no effort and instant oatmeal can be made using water heated in a coffee maker.

Book a Room with a Refrigerator: Some hotels have refrigerators in every room, others may allow you to rent a refrigerator. Check with the hotel when you make your reservation and be sure to reserve a refrigerator if you can. Hotels with small kitchens are a great option if you are staying more than a few days and want to prepare food yourself.

Visiting Friends and Family: You may find it difficult to cook or prepare food in someone else’s kitchen. While friends mean well, they may not understand what it takes to avoid cross-contamination. If traveling by car, it’s worth the effort to bring your own toaster, blender, and other tools that you may need.

Dining Out: Thoroughly vet the restaurants before you leave your home. Use apps such as AllergyEats to look for allergen-friendly restaurants in your destination area. Talk to the chef at the restaurant to plan what you will eat in advance and book an early reservation (before the kitchen is stressed).

Make Vacation Work with You: Stick with your EGID treatment plan, stick to your diet and stay on any medications. Above all, have fun and enjoy your time away!

This article was published in APFED’s EoSolutions Summer 2015 Newsletter.

American Partnership for Eosinophilic Disorders Kicks Off National Eosinophil Awareness Week (May 15–22, 2016)

Press Releases

(Atlanta, GA)— This week, the American Partnership for Eosinophilic Disorders (APFED) celebrates the 9th Annual National Eosinophil Awareness Week. National Eosinophil Awareness Week was established in 2007 by APFED, a patient and family advocacy and education organization, to support those who have eosinophil-associated diseases (EADs) and to raise the level of education and awareness in the public and the medical community about these conditions.

Eosinophil-associated diseases are real, they are rare, and they are growing in prevalence. We observe National Eosinophil Awareness Week acknowledging those who live every day with the concern that their exposure to certain triggers (e.g., food and airborne allergens) may have the potential to cause a reaction.

Imagine having a rare disease that makes your esophagus swell and narrow, preventing you from eating any food. Or one that causes inflammation and damage to your skin, lungs, heart, or nervous system. Imagine having a disease that causes bone pain, muscle pain, and thickened, puckered skin and not being able to find a doctor who is able to help.

Eosinophils (ee-oh-sin-oh-fil) are a type of white blood cell and an important part of the immune system as they help fight off certain types of infections and parasites. 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. With an EAD, cells respond to triggers by releasing toxins into the affected area.

The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDS) that affect the gastrointestinal tract and 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.

“Communities across the U.S. are affected by eosinophil-associated diseases,” said APFED Executive Director Mary Jo Strobel. “During National Eosinophil Awareness Week, we are pushing to ensure that every family affected by these conditions has access to the care, support and resources that they need. This event compels the research community, health care providers, caregivers, and people living with EADs to join together to heighten awareness and address the issues that this community faces.”

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.

“Research and education are two of the best tools to help people living with these disorders,” shares APFED’s President Dr. Wendy Book. “Educating the public and the medical community can reduce delays in diagnosis. Further, we are funding crucial research to better understand EADs, which we hope will lead to noninvasive testing and treatments.”

Organizations, healthcare providers, and institutions around the globe are joining APFED to recognize National Eosinophil Awareness Week by sharing information with their communities and with the public. Nutricia, the makers of Neocate®, a line of amino acid-based products, has partnered with APFED for its celebration of this special week by providing the means for the organization to distribute educational packets to health care providers and awareness materials to the public.

Organizations, Groups, and Healthcare Providers Joining APFED in Celebrating National Eosinophil Awareness Week:  Alabama Eosinophilic Disorders Support Group; Allergy & Asthma Physicians; American Partnership for Eosinophilic Disorders; ausEE (Australia); Cincinnati Center for Eosinophilic Disorders; CURED Foundation; Families Affected by Eosinophilic Disorders (UK); Food Allergy & Anaphylaxis Connection Team; Food Allergy Research & Education; Greenville Spartanburg Eos Support Group; Kids with Food Allergies (KFA); Texas Children’s Hospital Eosinophilic Gastrointestinal Disease Program; Utah Food Allergy Network Division of Eosinophilic Support. Learn more about what our partners are doing to recognize NEAW 2016.

Visit www.apfed.org to learn more about eosinophil-associated diseases, current research efforts, and community events that are taking place during National Eosinophil Awareness Week.

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

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