(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) is hosting its 15th Annual Patient Education Conference on Eosinophilic Gastrointestinal Disorders (EGIDs) this week in Greenville, SC on July 7-8. The conference is a unique opportunity for patients, families, caregivers, advocates, and experts from across the United States to exchange knowledge, experiences, needs, and perspectives.
Held at the Hyatt Regency Downtown, Eos Connection will provide a patient-tailored program that highlights important information in the clinical and research areas. This year’s conference will feature roughly 25 educational and experiential sessions designed specifically for the Eos community, from recently-diagnosed patients to veterans of EGID management. The agenda will also include programs for children and teens.
Eosinophil-associated diseases (EADs) are chronic inflammatory disorders characterized by 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 bloodstream, 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. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Those that suffer from EADs often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made.
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 APFED’s HOPE on the Horizon Walk on July 7 to raise funds for EGIDs research.
“APFED hosts this conference with the goal of providing our community of patients and families with education and resources to help effectively navigate EGIDs at any stage,” said APFED Executive Director Mary Jo Strobel. “We are grateful to an outstanding lineup of speakers who lend their time and expertise. This conference is celebrating its 15th year, and that would not be possible without an inspiring community that year after year shares its challenges, solutions, successes, and hope for the future.”
For those who cannot attend the conference onsite in Greenville, APFED offers a virtual registration option. On Saturday, July 8, virtual attendees may participate online via webcast in the conference’s general session and submit questions for conference speakers.
Eos Connection 2017 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
Eosinophil-associated diseases community bands together for awareness and action
(ATLANTA, GA)—This week (May 14-20, 2017), the American Partnership for Eosinophilic Disorders (APFED) celebrates the 10th Annual National Eosinophil Awareness Week (NEAW). NEAW was established in 2007 by APFED, a nonprofit patient advocacy 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.
Imagine having a rare disease the most people cannot pronounce and that many doctors have not seen or do not understand. You travel from doctor to doctor looking for answers, only to find that once you have a diagnosis, treatments are few. This is the reality for people who suffer from an eosinophil (ee–oh–sin–oh–fil) associated disease, a group of rare diseases caused by a white blood cell called the eosinophil.
EADs can cause disease in many different organs and can present differently depending on the type involved. Those that suffer often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. 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 for most subsets of EAD.
In honor of NEAW, members of the EAD community have joined together with APFED to develop an action-oriented social media campaign called READ for EAD: Rally Around Eosinophil Associated Diseases. The campaign is designed to inspire, educate, and remind patients that they are not alone. During NEAW, participants will dedicate words of inspiration to a loved one and share on social media using the hashtag #READ4EAD, and challenge their friends and family members to participate and/or make a donation to APFED.
“We are inspired every day by amazing individuals with EADs and their families,” said APFED Executive Director Mary Jo Strobel. “We know these READ for EAD contributions will help further strengthen the EAD community, offering not only inspiration but also a reminder that there are others out there who know the unique challenges of life with an EAD. It’s a fun, easy, and meaningful way to spread awareness far and wide.”
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.
“By taking action and educating others during NEAW, we can provide hope to patients and families living with these diseases, and change the future,” shares APFED’s President Dr. Wendy Book. “This week is a special time that joins the research community, health care providers, caregivers, and people living with EADs together to heighten awareness and continue to advance these conditions through education, research, and advocacy.”
Visit apfed.org to learn more about eosinophil-associated diseases, current research efforts, and community events that are taking place during National Eosinophil Awareness Week.
Organizations, Groups, and Healthcare Providers Joining APFED in Celebrating NEAW: Akron Children’s Hospital; Alabama Eosinophilic Disorders Support Group; American Partnership for Eosinophilic Disorders; ausEE (Australia); Center to Advance Palliative Care; Cincinnati Center for Eosinophilic Disorders; Families Affected by Eosinophilic Disorders (UK); Greenville Spartanburg Eos Support Group; Kids with Food Allergies (KFA); International Foundation for Functional Gastrointestinal Disorders (IFFGD); National Eosinophilia Myalgia Syndrome Network (NEMSN); New York Metro Eos Support Group; Utah Food Allergy Network Division of Eosinophilic Support. Learn more about what our partners are doing to recognize NEAW 2017.
About 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. To learn more about APFED and eosinophil-associated diseases, visit apfed.org.
1. Share Words that InspireOthers: READ for EAD is a new way to get involved in NEAW. It’s easy to take part—and your words can have a big impact during NEAW! Just pick an inspiring quote, passage from a book, a poem, or song lyric and someone to dedicate it to. Share a video of yourself reading with the hashtag #READ4EAD, and challenge others to join you.
2. Go Magenta! Did you know that magenta is the official color of awareness for eosinophil-associated diseases? Help start the conversation about EADs by painting your nails or wearing magenta. If people ask about it, share information or literature, such as our handout “Can you say EOSINOPHILIC?”
3. Educate Yourself and Others: Take some time read up on eosinophil-associated diseases (EADs) and choose three facts to share with your Facebook friends by posting them as a status update during NEAW week. Use the hashtag #NEAW2017 to spread awareness even further!
4. Put a Ribbon on It:Download and display our awareness ribbons on your social media profiles AND explain why you have done so.
5. Shop for Eos Merchandise like t-shirts, wristbands and buttons in our Gift Store and become a walking billboard of awareness for eosinophil-associated diseases!
7. Stay current!Sign up for APFED’s monthly e-newletter and get the latest news, research updates, events calendar and much more. Receive even more benefits by becoming a member of APFED.
8. Participate in a fundraiser or start your own. Check out our events page for fundraisers going on around NEAW, including a HOPE on the Horizon Walk in Kingsville, MD and a golf tournament in Green Lane, PA. Or host a bake sale, lemonade stand, or yard sale with proceeds benefiting our Hope on the Horizon Research Fund. Contact Julie Forrest at jforrest@apfed.org so we can assist you in the fundraising process.
10. Donate. Make a donation to our Hope on the Horizon Research Fund and ask others to do so too. All individual donations, matching gifts, and proceeds from fundraising events for APFED will count toward our $150,000 HOPE Challenge goal!
What are YOU doing during May 14-20 to help increase awareness during National Eosinophil Awareness Week? Share on the official NEAW Facebook Page!
Funding supports researchers who have novel approaches to understanding eosinophilic esophagitis
(ATLANTA, GA)—The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce the award of two HOPE Pilot Grants in support of promising research projects studying eosinophilic esophagitis (EoE).
The first of two awardees receiving APFED’s 2017 HOPE Pilot Grant is John Garber, MD, Instructor in Medicine, Harvard Medical School; Division of Gastroenterology, Department of Medicine, Massachusetts General Hospital. Dr. Garber will receive $100,000 over a two-year period for his project entitled, “Determinants of Integrin Signaling in Eosinophilic Esophagitis.”
Dr. Garber’s team will be studying the interaction of select integrins relative to recruitment and activation of eosinophils in the esophagus. Gaining a better understanding of the mechanisms of eosinophil recruitment may lead to the development of treatments that stop the migration of eosinophils into the esophagus.
The second 2017 HOPE Pilot Grant was awarded to Aaron Kobernick, MD, MPH, Assistant Professor, Allergy and Immunology, University of Utah. Dr. Kobernick will receive $100,000 over a two-year period for his project entitled, “Detection of Eosinophilic Inflammation in Patients with Eosinophilic Esophagitis by Oral Administration of Tc-99m Heparin.”
This research focuses on finding a noninvasive way to detect and monitor EoE. Dr. Kobernick’s team has developed a technique in which heparin labeled with a radioactive tracer can be used with a specialized camera to identify the presence of eosinophils in the esophagus. The aim of his research will be to assess the lowest amount of radioactivity that can be used to evaluate inflammation caused by esophageal eosinophilia.
This research shows great promise as a potential noninvasive method for doctors to use to evaluate whether a particular treatment method (e.g., dietary therapy, corticosteroids) is effective for a patient.
“The grant cycle was very competitive for this year’s HOPE on the Horizon Research Program,” said APFED Executive Director Mary Jo Strobel. “We are grateful for the generous donors who recognize the importance of investing in research that enables better quality of care and life for those with eosinophil-associated diseases. Their contributions enabled two awards this year, and we are excited to support this research.”
“We are so pleased that the Charit-EoE Concert for a Cure was able to assist in raising the funds to support these invaluable research grants to help us better understand EoE,” said Arlene and Lance Steinberg, organizers of the November fundraising event in New York City that benefited APFED’s HOPE Program. “The generous support of family, friends and many business associates helped further the quest for better therapies and ultimately a cure.”
APFED’s HOPE on the Horizon Research Program launched in 2005 and is supported entirely by donations. Contributions to the fund have enabled the organization to direct more than $2 million in support of research initiatives.
The HOPE Pilot Research Grants are competitive and are selected through a peer-review process. Applications are accepted from investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases. Successful applications focus on the development of new ideas that are likely to lead to future external funding.
About 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. To learn more about APFED and eosinophil-associated diseases, visit apfed.org.
As APFED begins our 15th year, we caught up with APFED’s founder Beth Allen for a look back—and a look toward the future—with the woman who started it all.
Flashback with APFED founder Beth Allen and Eos community member Zach Brunnet
Describe what it was like to get a diagnosis 15 years ago. How long did the process take? What was available at the time?
Fifteen years ago, the ability to receive a diagnosis was heavily dependent on the physician’s exposure and education around eosinophil-associated disorders (EADs). Eosinophilic esophagitis had not been coined EoE yet. It still went by EE and was often confused in paperwork as Erosive Esophagitis. Patients often bounced through many physicians seeking help. I had discussions with patients who had waited upwards of 10 to 20 years for a diagnosis and others who through persistence had ‘only’ waited 3 to 4 years. There was a paper that came out in the early to mid- 2000s that estimated 4 to 6 years as average length of time to receive a diagnosis. This number has since come down dramatically.
The information available back then was a random personal blog that one could find buried in a Google search. There was a paragraph available on a few web sites, and they cited the same information. Eosinophils in large amounts in the gut. Not much more. Everything else patient-related was speculative in nature. In 1999/2000 there were maybe 150-200 articles on EGIDs, and I printed most of them. I read them and researched the medical terminology to understand the disease state. I still have the binder with the articles.
The moment APFED was born was during a discussion with my son’s gastroenterologist. He said, “Do not look this up as there is nothing credible out there for you.” I immediately looked everything up. There were a lot of contradicting web sites and minimal information. That sentence and subsequent personal research led to the discussions with Jacque (Fanning) and Sherri (Herrick) and ultimately created APFED’s education and awareness path.
How were families able to connect in the early days without social media? What info was available online?
Early on, we created APFED online. Jacque, Sherri and I had never met in person when the organization was formalized and realized. We met after that point. We all came to know one another on a YahooGroups chat board. Facebook and similar entities were a long way off. Back then, it was long threads of parents and patients telling their stories and people who had lived similarly. They helped calm you down and talked you through the anxiety of this mystery illness. There was a heavy culture of empathy; we were all were sick and should not compare ourselves to each other. That spirit also carried into the founding of the organization.
Truly, we originally wanted to simply have a camp but no camp would take us. Conversations Jacque had went like this:
APFED’s First Annual Conference
“We have a rare digestive disease and simply want to host a camp. We can cover the necessary nurses.”
“Great. We do hot dog cookouts.”
“No. None of our kids can eat hot dogs.”
“Huh? Okay. We also do ice cream socials.”
“No. Can’t do those either.”
“We do a cookout. What about chicken?”
“We don’t want the food. Just the experience of being out together and building comradery.”
“Well, you might want to check with another camp because we aren’t sure we can accommodate you.”
Everything was food-centric. From those pre-APFED conversations came the spirit of “it’s not about the food at the events but about the events themselves.” No-food birthday cakes and celebrations began to take shape in the community.
Connecting was all on the message board and by telephone. A lot of us began to schedule our trips for health care together so we could share expenses and the kids could meet others like themselves. Back then, you were lucky to be local to a physician who understood this disease.
A fundraiser in Florida from the early days
What challenges did APFED face as a new nonprofit 15 years ago?
Financial was a big one. One comes in feeling very altruistic and that people will understand the need to develop materials and spread the word but giving was small when we started. We did a lot with the amount we had, and our first year was entirely dedicated to the first Patient Education Conference. It was a chance for like-minded people to come together and know that they were not alone and to become educated from the few physicians that had adopted our rare corner of the world.
Another challenge was gaining acceptance that this was bigger than “they” said it was. I had a physician tell me to my face, while laughing, that we were crazy to create APFED because eosinophilic disorders were THAT rare.
Our first grant enabled us to print brochures. The families involved were so dedicated that they would take those brochures to their local offices to help spread the word. That still happens even now. I remember taking my non-eos kid into an asthma/allergy office for a checkup and seeing one of our booklets on the table in the exam room. It came full circle very quickly, and I cried right there.
What are the top three improvements you have seen for our patient community over the last 15 years?
Obviously, “credible” information is now widely available. You do not have to dig to get an education on these disorders anymore. It is on Google, front and center. Physicians rely upon APFED more and more to be there for that daily support and education.
I was sitting in an office last September, and a family had just sat with the doctor who had performed a biopsy and told them their son likely had EoE. He knew my background and told them to ask me for information. I wrote down APFED.org for them, and held the mom and grandma’s hands and told them their boy would be okay. This was NOT the end of the world and fortunately there is a group out there for them.
Another improvement is access to local care! I love this. Patients should not have to travel such distances to obtain care.
And, of course, the development of potential approved therapies. I cross my fingers in the hope to see these passed ASAP!
What achievable goals can this community likely expect to see over the next 15 years?
This is what I hope for in the next 15 years:
• Treatments. Revise that to include safe, long-term treatments.
• Additional states adopting mandates for coverage of medical foods (and not just for
infants/ young children)
• The development of new, less invasive diagnostics?
• A better understanding of the root cause of the disease? Aside from the familial aspect, what is the catalyst that tips a person from fine to suddenly developing EoE/EGE?
• More research in the lower gut. I’m pretty passionate about that one. It is desperately needed.
• Lastly, transitional care programs. My heart and passion still lies in that area of pediatric/adult gastroenterology. The development of formalized programs that move a pediatric patient to the adult space without gaps.
Beth and Charlie Allen Today
Beth is now Director of Strategic Accounts for QOL Medical, a company that manufactures a sucrase enzyme replacement for patients with sucrose intolerance. She leads pediatric gastroenterology initiatives at the hospital and national levels.
Beth’s son Charlie is now 17. His eosinophilic disorders (EoE, EGE, EC) are still very up and down. He was also diagnosed with a mitochondrial disorder in 2014. He had his g-tube taken out in 2011, but is still eating a limited diet. Charlie is active in choir and lacrosse and recently started an a capella club at his high school. He still loves supporting other kids who have chronic health conditions.
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