INSIDE: Celebrate Food Allergy Awareness Week PAGE 2
FARE Community Outreach Awards PAGE 3
FARE-Funded Investigators Probe Immune Responses PAGE 4
improving the quality of life and the health of individuals with food allergies, and providing them hope through the promise of new treatments
FOOD ALLERGY Dear Friend of FARE,
ISSUE 5 SPRING 2018
Our Spring 2018 edition of Food Allergy Focus marks the start of this quarterly newsletter’s second year and the debut of its new digital format. We hope you will find this extended email newsletter informative and easy to read on any device. As a Friend of FARE, your donations make a direct impact on food allergy research, education, advocacy and awareness. As you may have read earlier this year, I recently announced my resignation and shared with you that I would stay during the search for a new CEO, or through December. Before I leave my current role as FARE’s CEO and chief medical officer, I’d like to take the time to thank you for all you have done to help us support the 15 million Americans with food allergies. It has been a privilege to help guide this organization in its vital mission: to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. I am very proud of the many goals we’ve achieved and advances we’ve made during my time with FARE: •
a nationwide network of food allergy centers offering state-of-the-art diagnosis, patient care and clinical trials
a fast-growing registry of nearly 5,000 food allergy patients
a college program to help young people embrace an independent stage of their food allergy journey
the groundbreaking LEAP studies that may prevent many cases of peanut allergy by reshaping how we introduce peanut foods to children
the expanded availability of stock epinephrine in schools and public venues
our reimagined FARE’s Food Allergy Heroes Walk and redesigned foodallergy.org website
When I joined FARE’s leadership, I planned to commit six months. After four years, I am glad to have had this opportunity, and I am grateful that FARE’s work on behalf of the food allergy community will be sustained by your generous commitment. Thank you. Sincerely,
K-12 Training, Anaphylaxis Course Launched By FARE
wo educational courses that aim to increase understanding of food allergies and anaphylaxis are now available online at no cost from FARE. All that is needed to access these two user-friendly, evidence-based courses is an Internet connection. The first, “Save a Life: Recognizing and Responding to Anaphylaxis,” takes just 15 minutes and covers the definition and causes of anaphylaxis, how to recognize symptoms, what to do if someone is having an anaphylactic reaction and how to safely use an epinephrine auto-injector. Over the past five years, FARE has worked with advocates across the country to help pass laws that expand access to epinephrine, the first-line treatment for anaphylaxis. Nearly every state in the country either permits or requires schools to stock undesignated continues on page 2 >
James R. Baker, Jr., MD CEO and Chief Medical Officer, FARE
public about food allergies, a potentially lifethreatening disease. While our focus on safety and inclusion is year-round, Food Allergy Awareness Week is a special opportunity to shine a light on food allergies and anaphylaxis.
Celebrate Food Allergy Awareness Week, May 13-19
n 1998, the Food Allergy & Anaphylaxis Network, now FARE, created Food Allergy Awareness Week (foodallergyweek.org) to educate the
K-12 Training < continued from page 1
This year, Food Allergy Awareness Week is May 13-19. Thousands of people around the country will participate by raising awareness and educating others. Check our Action Calendar each day for a month of ideas, and make an impact on behalf of the 15 million Americans with food allergies. Here’s just a few of the ways we can paint the town teal, the color of food allergy awareness: •
Turn the map teal as states and local governments issue official proclamations recognizing Food Allergy Awareness
Week. Let your officials know that food allergy is a serious medical condition and a growing epidemic. •
Rock our teal on #TealTakeover Day, May 17. Wear teal to show your support for food allergy awareness and illustrate the unity and size of our food allergy community.
Find a teal beacon of hope. The top of the Empire State Building will turn teal for food allergies on May 13. Are you near one of the landmarks turning teal in the U.S. and Canada this month?
Thank you for shining your light on food allergies with FARE. Together, we can help create a safer world and a brighter future.
The second course, “Keeping Students Safe and Included,” is geared toward school staff in the K-12 setting.
epinephrine in case of anaphylactic emergencies, and there are now 31 states with “entity legislation” that permits (but does not require) public venues to stock undesignated epinephrine. These venues range from colleges, camps and childcare facilities to sports arenas and restaurants.
Aligned with the recommended best practices found in the “Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs” previously released by the Centers for Disease Control and Prevention, the new course will improve understanding of the severity of food allergy among school staff who take the training.
Entity laws require venues willing to stock epinephrine to have staff undergo appropriate training on anaphylaxis. This course addresses that need with free and convenient anaphylaxis training for the general public. View and share the course at foodallergy.org/training/anaphylaxis.
The course also covers anaphylaxis and allergic reactions and discusses how school staff can successfully enact a food allergy management plan or policy in order to create a safer and more inclusive environment for students with food allergies.
Volunteers can deliver the training in person using FARE’s PowerPoint presentation and accompanying speaker notes, or schools can opt to use the fully narrated and interactive version that is available for free online. View and share the course at foodallergy.org/k12.
Come Celebrate Our Food Allergy Heroes. Find your walk and start building your team today at foodallergywalk.org. I walk to help others with food allergies and to help scientists find a cure. – Kennedy B. Bagyi
FARE Community Outreach Awards Fuel New Ways to Raise Awareness
arlier this year, FARE awarded more than $104,000 for 42 projects through our Community Outreach Award program. These grants will enable support groups and FARE’s Food Allergy Heroes Walk committees in 25 states and Mexico to carry out initiatives that educate communities about the serious nature of food allergies and improve the lives of individuals and families managing food allergies. Happily, we were able to fund all of the Community Outreach Award applications received in 2018. The success of this program relies on two irreplaceable groups: the generous donors that contribute to FARE through fundraising events and individual contributions, and the tireless food allergy advocates who use those donations to raise food allergy awareness in their communities. Completed grants from 2017 show the breadth and impact of these donor-funded programs: •
Award recipients hosted safe, inclusive activities for kids and teens, from a bowling event organized by and for middle schoolers, to allergy-friendly holiday events and arts and crafts activities encouraging young people with food allergies to express themselves. Jenine Lawton of Parents Having Allergic Children Team (PHACT) in Chester County, PA, described how meaningful a capacity-crowd Easter Egg hunt was for participating families,
“some with tears in their eyes, thanking us for having an hour of their lives that their kids could just ‘be’ without the worry.” •
Support groups developed and distributed educational materials, including information for physicians about anaphylaxis, packets for newly diagnosed food allergy families, online resources connecting members of local food allergy communities, and book donations to public and support group libraries.
Medical professionals offered food allergy safety training to schools and day camps. Some of the schools have acquired stock epinephrine as a result. More trainings are planned for 2018, with separate, age-appropriate presentations being developed for adult professionals and junior counselors.
One walk committee used some of their grant to feature a popular children’s entertainer at their Food Allergy Heroes Walk. By drawing young fans to an event they might not learn about otherwise, volunteers expanded the circle of food allergy awareness and helped combat food allergy bullying.
Visit the FARE blog for the complete list of 2018 Community Outreach Awards. Thank you for supporting these grassroots efforts nationwide.
2018 Research Retreat Recap
he Sixth Annual FARE Research Retreat, held April 13-14, 2018, in McLean, VA, brought together 130 members of the food allergy community, including adult food allergy patients, parents of children with food allergies, and scientists and clinicians engaged in food allergy research. Study updates were given by FARE-funded academic researchers as well as pharmaceutical industry representatives working to develop food allergy therapies. Also presenting at the retreat were members of FARE’s Outcomes Research Advisory Board (ORAB). Food allergy patients and clinical care providers spoke about the psychosocial impacts of food
allergy and the importance of collecting quality-of-life data and providing support services to patients participating in clinical trials. Funded by a two-year grant from the Patient-Centered Outcomes Research Institute, the ORAB’s four regional boards have brought food allergy patients and parents together with other stakeholders to promote food allergy research informed by real-world experience. Since 2016, more than 40 ORAB members have invested more than 3,000 volunteer hours in defining, documenting and sharing their research priorities, which include more accurate diagnostic methods, new therapies to protect against severe reactions, food labels that make it easier to avoid allergens without excluding safe foods, improvements in epinephrine, and care that addresses social challenges such as stress, anxiety and bullying. Researchers supported by FARE Investigator in Food Allergy awards presented their labs’ latest findings, including final reports from 2015 New Investigators Jessica O’Konek, PhD, and Duane Wesemann, MD PhD. Recent projects by O’Konek and by 2015 Mid-Career Investigator Simon Hogan, PhD, are summarized in this newsletter. Other highlights included talks explaining the large clinical trials recently completed for AR101, Aimmune Therapies’ characterized peanut f lour for oral immunotherapy, and Viaskin Peanut, DBV Technologies’ peanut-coated skin patch for epicutaneous immunotherapy. Early studies of several next-generation biologic drugs were also presented. Researchers left the retreat engaged by the exchange of ideas and inspired to design clinical trials that provide high-quality data, treatment opportunities, and comprehensive patient care.
FARE-Funded Investigators Probe Immune Responses
apers authored by two FARE Investigators in Food Allergy have been published in the Journal of Allergy and Clinical Immunology. In November 2017, Simon Hogan, PhD, who received a Mid-Career Investigator award in 2015, identified in mice a pathway that contributes to the most dangerous symptoms of anaphylaxis: shock (a drop in blood pressure) and respiratory failure. The research spotlighted how non-immune cells – in this case, the vascular epithelium cells that line the inner surfaces of blood vessels – can receive and respond to immune system signals that contribute to allergy symptoms. During an allergic reaction, histamine and other small molecules released by immune cells can make blood vessels leak f luid into surrounding tissues. The pathway identified by Hogan’s lab at Cincinnati Children’s Hospital Medical Center* involves a small immune signaling protein called interleukin-4, or IL-4. Histamine plus IL-4 make blood vessels leak more than histamine alone, so blocking the IL-4 signal limits the respiratory and Hogan circulatory symptoms of anaphylaxis. This is an exciting discovery, because a drug that inhibits IL-4 signaling was recently approved to treat moderate to severe eczema. Jessica O’Konek, PhD, the recipient of a 2015 New Investigator award, also used mice in her research published last month. Her team at the University of Michigan developed an ultraO’Konek fine nasal spray containing peanut protein, highly purified soybean oil, detergents and water. This mixture was blended at very high speeds to create tiny droplets of nano-emulsion. When administered through the nose, nano-emulsion triggers an immune response that helps fight bacterial or viral infections. The researchers used the peanut nanoemulsion as an intranasal vaccine to retrain the immune responses of mice that had been sensitized to peanut protein. By enhancing infection-fighting responses, the nano-emulsion limits allergic responses. Three monthly doses of the nano-emulsion vaccine successfully prevented the sensitized mice from reacting to peanut. The researchers hope to eventually develop similar food-specific nanoemulsion vaccines to treat human patients with food allergies.
FARE Federal Advocacy for Better Food Labeling
pril was a busy month in efforts to improve food allergen safety. Senior National Director of Advocacy Jen Jobrack attended the biennial meeting of the Conference for Food Protection (CFP), held April 16-20 in Richmond, VA. Established in 1971, the CFP allows members of industry, regulatory, academic, consumer and professional organizations to provide formal input to the development and modification of food safety guidance issued by the U.S. Food and Drug Administration (FDA). FARE is one of three consumer groups formally appointed to the CFP. This year, we submitted a proposal regarding the food allergen knowledge of retail staff who participate in the sale of non-prepackaged foods, such as from a bakery counter in a supermarket. In response to this and other related proposals, the CFP has recommended that a food allergy task force be established to consider additional food allergen safety needs that can be addressed by modifications to the FDA Food Code. As of this writing, the task force is expected to be approved and will report its findings next year. Also last month, the Food Labeling Modernization Act of 2018 (H.R.5425 and S.2647) was introduced in the U.S. House of Representatives on April 2 by Rep. Frank Pallone (D-NJ) and Rep. Rosa DeLauro (D-CT) and in the U.S. Senate on April 11 by Sen. Richard Blumenthal (D-CT), Sen. Sheldon Whitehouse (D-RI) and Sen. Edward Markey (D-MA). FARE thanks these sponsors and supports this legislation, which would require that sesame be labeled under the Food Allergen Labeling and Consumer Protection Act (FALCPA) and that allergen information be included on the labels of nonpackaged foods sold at retail. Sesame is comparable to the “top eight” allergens in allergy prevalence, and very small amounts of sesame can trigger severe reactions. It’s important that food allergy families across the country tell our congressional delegations how much the food allergy community values sesame labeling. Let’s make our voices heard to protect individuals with sesame allergy and lessen their allergy management burden.
Manufacturer kaléo now offers an AUVI-q® epinephrine autoinjector to treat anaphylaxis in younger children weighing 16.5 to 33 pounds (7.5 to 15 kilograms). The new AUVI-q 0.1 mg has a shorter needle length and delivers a lower dose of epinephrine than other auto-injectors sold in the U.S. The AUVI-q 0.1 mg is pocket-sized and features automated voice instructions. Learn more about the range of epinephrine autoinjectors on the market, as well as patient assistance programs to make auto-injectors more affordable.
*Hogan is now on the faculty of the University of Michigan.
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