Advocacy Organizations Highlight Successes and Resources

During a plenary session at the ACAAI annual meeting, the college invited six lay organizations to share their progress in allergy and asthma advocacy and promote their resources and missions to clinicians.


Food Allergy & Anaphylaxis Connection Team (FAACT) Take Teal Nationwide

Eleanor Garrow, president and chief executive officer (CEO) of FAACT, has a 16-year-old child with food allergies. The mission of the organization she leads is to educate patients and families and counsel them about their civil rights in schools. They have a civil rights advocate on their panel and offer the service free of charge. FAACT also runs CAMP TAG for children with fool allergies, a teen retreat, support group development, and an annual summit for industry. Their website hosts allergen-friendly training series, guides for newly diagnosed patients, and awareness bookmarks and posters for distribution at schools and clinics.

FAACT is the organization behind the Teal Ghost campaign, a widespread partnership with every Walmart in the United States and Canada, which urges non-food fun for Halloween. The initiative has been so successful that they are adding Valentine’s Day and Easter in 2019. They also initiated Food Allergy Awareness Week in May.


American Lung Association (ALA) Aims to Double Research Awards and Grants in Five Years

One of the ALA’s strategic imperatives is to reduce the burden of lung disease and asthma, said Harold Wimmer, national president and CEO. Among the organization’s efforts is educating school personnel with Asthma Basics, available on site in schools or online, and the online Asthma Educator Institute, a two-day course for healthcare professionals who want to implement asthma guidelines–based care. ALA’s other main area of concentration is support of research. It has operated a clinical research network for 20 years, which now includes 17 institutions. In addition, it aims to double its spending on awards and grants in the next five years. Wimmer asked attendees to get the word out about the program.

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Asthma and Allergy Foundation of America (AAFA) Encourages Partnerships for Vaccination Coverage

Kenneth Mendez, president and CEO, has two children with food allergies and severe asthma. He leads an organization that publishes a series of guides that list the most challenging places to live with asthma and allergies. It also offers a self-paced course about asthma care for adults in collaboration with the CDC. The AAFA has a certification program for allergy-related products and intervenes to advocate for the population, such as during recent shortages of epi pens. It has also used social media to tell patient stories, like Javan Allison, a boy who wrote a children’s book about living with food allergy. Mendez said AAFA has had success with vaccination coverage and encouraged attendees to partner on that issue.

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Allergy and Asthma Network (AAN) Invites Practitioners to Advocacy Day in D.C.

Tonya Winders is a mother of five, four of whom live with atopic disease, from food allergy to asthma to dermatitis. She leads a network that seeks to end needless suffering and death from allergies and asthma. The network conducts the “Asthma. Take Action. Take Control.” campaign with the CHEST society. AAN offers education on multiple channels and in multiple languages, targeted to particular populations. Its mobile app has 2,000 users. Winders said AAN is “known as the poster people,” supplying more than a million per year to the clinics. A new initiative aims to improve shared decision-making for asthma, atopic dermatitis, and allergen immunotherapy. In addition to building awareness of clinical trials that patients can participate in, the organization promotes advocacy, hosting a day in Washington, D.C., for families and practitioners. Winders invited the audience to participate, saying AAN does the scheduling and preps people for visits to representatives.

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National Eczema Association Hosts Tool to Match Patients with Providers

The National Eczema Association aims to “equip healthcare professionals for a new era in eczema care,” said Julie Block, president and CEO. The association offers webinars, booklets, and fact sheets, all of which can help clinicians educate patients despite limited face-to-face time. The organization’s recent #UnhideEczema campaign was very impactful, she said, and hosts an Eczema Expo each year. It is advocating for October to be Eczema Awareness Month, and its Seal of Acceptance helps patients more easily find products for people with eczema and sensitive skin. Block stressed that patients want to find people who are passionate about treating eczema, so she encouraged clinicians to register for a tool they host that matches patients with healthcare practitioners.

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Food Allergy Research & Education (FARE)

FARE is the largest private funder of research in the field, said Mary Jane Marchisotto, senior vice president of research and international. The organization is leveraging its clinical network of 31 centers of excellence developing (and growing) a FARE patient registry with data on the number of food-allergic patients currently identified. The registry is poised to collect and organize big data in a standardized format to attract researchers to the field, and to support research defining the causes and mechanisms of food allergy, boost enrollment in clinical trials, and support the development of better diagnostics and therapeutics. FARE also offers many resources, including the National Academies Consensus Report from 2016, which highlights areas for change and advocacy. FARE advocates the increased supply of epi pens;  epi pens in federal buildings; sesame labeling; NIH funding of research in the field; FDA priorities for drug development; and guidelines for K–12, colleges, and universities.

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