Food Allergy Research & Education

Location
Registered Name
Food Allergy Research & Education Inc
Tax ID
13-3905508

Overview

Food Allergy & Research Education is the world's largest non-profit organization dedicated to food allergy awareness, education, research, and advocacy; the group provides information, programs, and resources about food allergies and anaphylaxis. The organization was founded in 1991 to serve as a clearinghouse for food allergy information, by a parent whose own daughter was diagnosed with milk and egg allergy.

Source: Wikipedia

Financials

$13m
Annual Budget
December 2018
6% Loss
Program Spending
66%
Fundraising Spending
18%
Management Spending
16%

Programs

Research

$4.5m

Fare clinical networkthe cornerstone of our efforts was the launch of the fare clinical network ('fcn') in 2015 with 24 centers of excellence across the united states. The fcn sites are changing the face of food allergy research by raising the quality of care for food allergic patients nationwide, by reducing discrepancies in care among providers, and by making comprehensive care available for all patients with food allergies. Fcn sites are helping parents, caregivers and patients identify centers that provide clinical and sub-specialty food allergy services of the highest quality and that are leaders in rapidly applying new evidence-based knowledge. Importantly, fcn centers are accelerating drug development for food allergy by enhancing sites' infrastructure and capabilities to perform crucial late stage trials and providing the basis for the development and growth of fare's national food allergy patient registry and , eventually, bio-repository. Fare added five new sites in 2016 and an additional three in 2017. Fare's annual investment in the network in 2017 was $2.2mm for 29 sites (three sites have gone inactive since inception due to personnel changes). The annual investment represents fare's support of part of the principal investigator's salary and the salary of a full-time research coordinator. At year-end 2017, the fcn had 29 active member sites.fare patient registryon May 22, 2017, the fare patient registry was launched. The registry will be a vital tool that will harness the power of patient data to accelerate research toward revealing the causes of food allergy, uncovering, for example, why food allergy rates have increased in recent years and identifying which treatments might be most effective for individual food allergy patients. Patients with food allergies or relatives of children with food allergies are encouraged to participate in the registry and help advance scientific discoveries by anonymously sharing their medical histories with scientists and others. This is a simple step that will provide critically important data to assist researchers in many ways and help individuals track their own clinical histories. Fare's patient registry will collect and store detailed, de-identified information about people with diagnosed food allergies. Among its many uses, the registry database will be a valuable source of data on food allergy prevalence, demography, management and outcomes that can be accessed by researchers, clinicians, caregivers, pharmaceutical companies and others. In addition to data provided by patients, the registry will house information from doctors and hospitals, including those in the fare clinical network, a collaborative network of 29 research and clinical care institutions across the country.fare's plans for the patient registry include a repository of biological samples collected from food allergy patients at participating centers in the fare clinical network. Dna, rna, biopsy and serum samples will speed the discovery of serum biomarkers, genetic risk factors and environmental triggers of food allergy. Data will assist fare in its advocacy efforts for regulatory approval of treatments.participating patients will be able to use the registry as a food allergy management tool to help them keep records of their allergic reactions, track the progression of their disease, and connect with clinical trials in their area. A patient would have the option of sharing this data with his or her healthcare providers. New investigator and mid-career awardsfare is also committed to markedly increasing the number of investigators in the field through its investigator in food allergy award program that was also launched in 2015. The program is divided into two categories: new investigator awards and mid-career awards. The inaugural fare investigator in food allergy awards were launched and funded in 2015. Fare launched the second cycle of this program in the fall of 2016 (and announced recipients in early 2017). The recipients for the first cycle were:2015 new investigator recipients ($75k annually for 2 years)1. Jessica o'konek, phd, university of michigan (ann arbor) o'konek researched the modulation of food allergy responses with nanoemulsion-based allergy vaccines, exploring the possibility of providing protection against anaphylaxis with intranasal administration of nanoemulsion combined with egg or peanut antigens.2. Duane wesemann, md, phd, brigham and women's hospital (boston) wesemann seeks to identify the extent to which primary ig repertoires can be influenced by microbial and dietary exposures early in life and examine how modification of these exposures can reduce allergic response to food.both studies concluded in September 2017.2015 mid-career award recipients ($150k annually for 5 years)1. Simon hogan, phd, cincinnati children's hogan's work focuses on identifying the key proteins and cells that cause the blood vessel fluid leak leading to severe anaphylaxis triggered by foods. This knowledge will have important implications for developing new treatment strategies and therapeutics for preventing the development of severe, life- threatening food reactions.2. Michiko oyoshi, phd, boston children's hospital and harvard medical school oyoshi is examining the role of maternal antibodies transferred to babies through breast milk in inducing oral tolerance in children. This study may support potential beneficial effects of maternal allergen exposure during pregnancy and lactation on protecting babies from food allergy.3. Erik wambre, phd, benaroya research institute (seattle) wambre is investigating the specific t cell responses to peanut allergic components to determine the cellular and molecular mechanism associated with peanut sensitization, as well as those that lead to restoration and maintenance of protective responses.2017 new investigator recipients ($75k annually for 2 years)1. Edda fiebiger, phd, boston children's hospital and harvard medical schooldr. Fiebiger is evaluating whether treatments to inhibit a protein that is active during allergic reactions might lead to better outcomes for oral immunotherapy.2017 mid-career award recipients ($150k annually for 5 years)1. Robert anthony, phd, massachusetts general hospital and harvard medical school (boston) dr. Anthony is examining the role of antibody glycosylation - the addition of sugar molecules to antibody proteins - in promoting or limiting allergic reactions.2. Stephanie eisenbarth, md, phd, yale school of medicineby studying a rare, inherited sensitivity to food allergens, dr. Eisenbarth is searching for insight into mechanisms that underlie food allergies in the general population. Fare also supports established researchers through funding basic, clinical and epidemiological research at several sites across the country.fare continued its support of the following research studies in 2016 that were approved in prior years. Please note that fare's research advisory board (rab) not only reviews all grant applications in a conflict free manner, it also monitors progress relative to milestones closely for all grant awards.1. Edwin kim, md - u. North carolinasecond site: u. Texas southwest (drew bird, md) study: peanut sublingual immunotherapy trialprevious studies on sublingual immunotherapy (slit) and oral immunotherapy (oit) for peanut have shown that both approaches are able to desensitize most patients to a degree that is likely to prevent allergic reactions after accidental ingestion. However, while slit appears to be far safer than oit, it produces a less robust desensitization effect. The long- term objective of this study is to develop a safe and effective treatment for peanut allergy that will enable patients to develop tolerance. To that end, this study of 48 patients aims to determine whether 36 months of treatment with peanut slit will result in clinical tolerance. It also seeks to define the changes in the body's immune system that lead to tolerance. Dr. Edwin kim and his team hope that this study will provide a strong scientific basis for the development of slit and other treatments that aim to produce long-term clinical tolerance to peanuts and other foods. This study is also being conducted at ut southwestern medical center in dallas.status: fully enrolled. In addition, fare continued to fund the ongoing clinical trial for walnut oit.the results of fare-funded research studies were published in leading peer-reviewed scientific journals, including allergy & asthma proceedings, annals of allergy and immunology, jama pediatrics, the journal of allergy and clinical immunology, and the journal of allergy and clinical immunology: in practice and presented at academic meetings in the united states and in europe.[continuned below at line 4d]

Education and Advocacy

$3.8m

Education:fare conducted food allergy education through both national and regional efforts. These education programs provided vital information on preventing and managing food allergy reactions, including the life-threatening reaction known as anaphylaxis. Fare's national education initiatives provide information for those living with food allergies, as well as those whose work is impacted by food allergies and the public.in 2017, fare provided free educational information through its website (foodallergy.org) and blog, maintained an ongoing webinar series on a variety of topics related to food allergy management, and distributed key educational materials such as "your food allergy field guide," a comprehensive resource for newly diagnosed patients. Fare also hosted its annual teen summit, a national gathering of teens (ages 11-22) with food allergies, along with their parents and siblings; and our national food allergy conference, which brought together individuals and families managing food allergies, caregivers, school staff, and health professionals- adding a learning track and continuing education for school nurses - giving them an opportunity to learn about advances in food allergy research and advocacy, best practices and practical skills for living well with food allergies; and the international food allergy & anaphylaxis alliance meeting, which gathers leaders from patient advocacy organizations across the world to inform international policy on food allergy research, education and treatment, advance food allergy awareness, and encourage the commercial sector to support the food allergy community.fare continued the work of its college program, launching a new search tool to provide more detailed and searchable information on accommodations for students with food allergies on college campuses.in 9 pilot communities around the country, fare worked with the community engagement councils. The councils consist of groups of food allergy healthcare professionals, advocates, families, and volunteers. Their work is to improve education, outreach, and advocacy efforts locally. Fare also provided 26 community funding awards to local food allergy advocates and group leaders to support education and awareness programs in their local communities. These awards again served hundreds of families across 20 states. Advocacy and public policy: fare devoted resources to addressing a range of public policy issues that affect americans with food allergies and the entities that serve them. Fare continued to provide information and subject matter expertise to the u.s. Congress, food and drug administration, the u.s. Department of agriculture, the national institutes of health, and a variety of professional associations in related fields. Fare continues to lead efforts to educate elected officials and key regulators about the impact of high epinephrine auto-injector prices, out of pocket expenses, and other insurance access challenges on members of the food allergy community and worked to highlight solutions to improve competition, innovation, access, and affordability in the epinephrine market, particularly in light of recalls and inventory concerns. We are also working to introduce public policy that would provide a variety of protective and inclusive measures for people with food allergies at school, at work, while traveling, and while purchasing grocery products with accurate labeling information.nationwide, fare has been integral to the passage of laws that allow public entities to stock auto-injectable epinephrine in 33 states and saw eleven pieces of food allergy legislation pass last year. We also organized successful food allergy awareness days in four state capitals (annapolis (md), austin (tx), boston (ma), and jefferson city (mo) to demonstrate support for legislation.). Fare continued its collaborative efforts with allied professionals by presenting at conferences and working on projects with fair health, the national confectioners association, the conference for food protection, the grocery manufacturers association, feeding america, and others.

Awareness

$2.2m

Through our programs and outreach to media nationwide, fare heightens awareness of food allergy as a significant and growing public health issue that demands urgent attention. In 2017, fare launched the rebrand of the national food allergy walk, fare's food allergy heroes walk and the new community focused walk program, fare's hometown heroes walk. The programs brought together supporters in 40 communities for family-friendly events focused on supporting the food allergy community's cause and increasing awareness of food allergy as a serious public health issue.in May 2017, fare continued its food allergy action month campaign, which expands the traditional awareness week into an entire month of activities and actions supporters can take to help increase understanding of food allergies and make a positive difference in the lives of those managing the disease.in September and October 2017, fare raised awareness about food allergies via its high-profile campaign, the teal pumpkin project, designed to promote safety, inclusion and respect of individuals managing food allergies and to keep halloween a fun, positive experience for all. Resonating with communities across the country and around the world, the teal pumpkin project reached more than 5 million users on facebook, more than half a million people on twitter, was covered by hundreds of media outlets, and garnered participation from all 50 states, washington, d.c., and puerto rico.in the digital space, fare's award-winning website and blog received almost 5 million page-views in 2017, fare's bimonthly e-newsletter reached more than 150,000 subscribers with each edition, and fare's growing social media presence reached millions of users with important information about food allergies and fare programs.in 2017, fare issued 166 allergy alerts and ingredient notices. The alerts provide information about mislabeled or recalled food and the ingredient notices are advance notifications of ingredient changes from food companies. For food allergy families, this is critical information to receive in order to prevent inadvertent reactions.

Leadership

Janet Atwater Chair
Rob Nichols Vice-chair
Mike Lade Treasurer
Denise Bunning Secretary
Sandeep Dhar Chief Financial Officer
Maria Acebal Director
David Crown Director
Leigh Feuerstein Director
Andy Gilman Director
John Hannan Director
Joe Ianniello Director
Helen Jaffe Director
Rebecca Lainovic Director
Sharyn Mann Director
Adam Miller Director
Elise Purcell Director
Joelle Resnick Director
Robert L. Rich Director
Julie Wilcox Director
James R. Baker Chief Executive Officer
Mary Jane Marchisotto SVP Research
Lois A. Witkop Chief Advancement Officer
Scott Riccio SVP Education & Advocacy
Lanny Bromfield Controller
Source: IRS 990