Food Allergy Advocates Celebrate Courage at Record-Setting Summit
The Contains:Courage® FARE Summit 2019 was held Nov. 1-3 at the Gaylord National Resort & Convention Center near Washington, D.C. This dynamic summit meeting drew over 1,000 participants. Tweens, teens and adults living with food allergy came together with family members, health professionals and other allies in the nation’s largest ever educational food allergy event for families.
Edited by Toni Taylor and Jon Terry
Allergy Advocacy Association Co-Founders
November 20th, 2019
Dealing with life threatening allergies by patiently, courageously putting one foot in front of the other for the long haul, eventually achieves the desired result. This year’s Food Allergy Research and Education teen conference was a great reminder of this. There were some exciting updates in the areas of product development, advocacy, and research.
This event was a timely reminder that those dealing with anaphylaxis cannot be reduced to their allergies. In addition to courageous, they are accomplished self-advocates, creative, curious, and entrepreneurial.
We were delighted to feature special guest and actress, Cree Cicchino, as the host for the 2019 FARE Vision Awards Presentation. Cree talked about her personal experiences as she and her twin sister Jayce were born with multiple food allergies that they still manage to this day. The final day of the Summit marked the two-year anniversary of the death of Elijah-Alavi Silvera, who suffered anaphylaxis after being fed a cheese sandwich at preschool, and the Outstanding Advocacy Impact Award was renamed in Elijah’s honor.
Recipients of the 2019 FARE Vision Awards were recognized for their outstanding and tireless efforts to support FARE’s 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.
The Honorable Doris Matsui of the United States House of Representatives received our first Vision Award for Outstanding Leadership in Public Policy. We thank her and her fellow Vision Award recipients:
- Ira Riklis, who received the Elijah-Alavi Silvera Outstanding Advocacy Impact Award
- Tessa Grosso, who received the Contains: Courage® Outstanding Teen Award
- Dr. David Anmuth, who received the Health Professional Award for Volunteer Service
Michael Lade, who received the Outstanding Community Education Award
Pixie Lizzie, which received the Outstanding Business Award for Food Allergy Activism
Friday evening showcased the creativity and originality of young food allergy advocates with the Innovation Tank competition, featuring bright ideas and inventive prototypes to help make life with food allergies better. Our 2019 Innovation Tank winner is Madigan Hester, who created the prototype for H&H Meditat, a semi-permanent medical tattoo that can’t be forgotten at home and won’t get in the way during sports activities.
On Saturday, we were treated to a passionate keynote speech by motivational speaker Gian Paul Gonzalez who talked about the importance of being “all-in,” showing up and being committed. This Summit highlight officially kicked off the weekend’s programming, which offered more than 60 sessions and more than 70 speakers. But a lot of what is special happens beyond the educational sessions through the special sense of community that is shared over these three days. Teens were able to be themselves as they hung out in our teen lounge, and adults and teens alike got to bond over shared experiences during our adult and teen socials.
Earlier this year, US member of Congress Doris Matsui introduced the FASTER Act to accelerate urgently needed research and regulatory reforms and to update allergen labeling laws to include sesame. Rep. Matsui has provided vital leadership and educated her colleagues and the public about life-threatening food allergies.
On the advocacy front, FARE’s big legislative push this year is the FASTER Act (HR2117) and a big win that’s been a long time coming: adding food allergies to the Americans with Disabilities Act (ADA) list of disabilities requiring reasonable accommodation.
The FASTER Act (HR 2117) proposes 2 things:
- The relevant agencies begin collecting data on the prevalence of and costs associated with managing allergies.
- Add sesame to the current list of allergens.
Please join FARE and Allergy Advocacy Association in supporting this legislation important to food allergy community. You can do this by contacting your congressional representatives when they are back in their districts during legislative breaks. If you can’t meet with your congressional representative, meet with the staff member, who will likely know more about the law and why it’s important and pass your thoughts along to your rep.
The biggest news of the conference was the addition of food allergies to the Americans with Disabilities Act (ADA) list of disabilities requiring reasonable accommodation. Mary Vargus of Stein & Vargus LLP, a civil rights law firm focusing on full inclusion of all aspects of life for those with disabilities with policy advocacy and litigation, walked us through the down-stream effects of this addition.
There is a direct impact on those travelling by plane with allergies. After working for many years with Lianne Mandelbaum, Founder of No Nut Traveler, they were able to represent 3 clients (one of them FARE) in lawsuits against American Airlines that forced the company to change their policy of reasonable accommodation of those travelling with food allergies. After years of resisting efforts by Mary and Lianne, American Airlines now offers early boarding to those travelers so they can wipe down their seating area before takeoff.
How reasonable accommodation of food allergies applies in schools is interesting. It doesn’t allow for making schools completely allergen free, as many advocate for. The reasonable accommodations schools are now expected to provide to food allergic students is a lunch table that is free of allergens in a way that doesn’t ostracize anyone. Schools nurses reported that in some schools, the “cool” table is now the one that is allergy safe.
Requiring reasonable accommodation of students with food allergies further strengthens the case for broad based availability of epinephrine across the campus. In addition to student self-carry and nurse authorized stock epi requirements, other faculty and staff (bus drivers, kitchen and custodial staff) can now be trained and equipped to administer epinephrine safely.
Our Summit advocacy presentations include:
- Mastering the art of the legislator meeting. Getting new treatments and cures requires strong relationships with Members of Congress. Meetings are crucial for building these relationships. Every good meeting follows the same formula.
- Why we won't get treatments and a cure without advocacy. Treatments and cures require more funding, a streamlined regulatory process, and engagement with pharma companies and health plans. To accomplish all of this, the food allergy community must be well-organized. FARE has a plan for doing just that.
Food Allergies Research announced the launch of the Courage at Congress Campaign. Our goal is to hold or schedule at least 100 meetings with Members of Congress by February 2020. We are asking Members to co-sponsor the FASTER Act, which will help accelerate the pace of food allergy research. You can sign-up here to attend or coordinate a meeting near your home.
FARE will be forming Advocate Teams across the country to help push for more research that will find new treatments and a cure. Teams can also be mobilized to advocate on state and local issues. If you're interested in joining or leading one of these local teams—or just learning more—contact Jon Hoffman at FARE.
Director, Advocacy and External Affairs
© Copyright Allergy Advocacy Association 2019. This article contains excerpts from the FARE Website.