Articles for Advocacy

DC Legislation Update

This past year the Allergy Advocacy Association was active in promoting important legislation to help those impacted by life threatening allergies. Though 2020 was a challenging year, our association worked with others in the nonprofit community, including the Asthma and Allergy Foundation of America (aafa), Food Allergy Research & Education (FARE), Allergy & Asthma Network (AAN), the Food Allergies and Anaphylaxis Connection Team (FAACT) and End Allergies Together (EAT) to advocate for legislation and policies. Our efforts were a reminder that working together we are better able to serve those impacted by life threatening allergies.

Read all about epinephrine.

Sesame Label Warning Jan, 2021

Reported and edited by Jon Terry
January 14th, 2021

Greetings! Last March our association participated in a major advocacy event at the US capitol lobbying for passage of two bills. The result was enactment of H.R. 2468 and advancement of H.R. 2217 the "Food Allergy Safety, Treatment, Education, and Research Act of 2019." (In this issue of our e-newsletter, you'll find more information about H.R 2468 within our next article.)

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H.R. 2468 the School-Based Allergies and Asthma Management Program Act Becomes Law

New Federal Law Helps Schools Prevent Asthma and Anaphylaxis Emergencies

A new federal law now provides grant preferences to states that take proactive steps in helping the millions of school age children impacted by allergies and asthma. In Spring 2020, the Allergy Advocacy Association lobbied lawmakers to pass the School-Based Allergies and Asthma Management Program Act. This new law may provide an opportunity to expand our educational/training, through our The Epi Near You NY program.

You can read all the questions and answers about epinephrine.

FARE Contingent, Washington D.C., Mar, 2020

H.R. 2468 the School-Based Allergies and Asthma Management Program Act Becomes Law

By Patrick Morris
January 12th, 2020

This January the bi-partisan School-Based Allergies and Asthma Management Program Act H.R. 2468 was signed into law. This law will provide assistance to millions of school children dealing with allergies and asthma. It does so by providing preferences for grants, under the children's asthma treatment program, to states that require schools to establish allergy and asthma management programs.

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US Senate Passes FASTER Act, Brings Mandatory Sesame Labeling One Step Closer

Concerning successful advocacy during 2020 in Washington DC, congratulations to everyone who helped pass the The Food Allergy Safety, Treatment, Education, and Research (FASTER) Act of 2020 thru the United States Congress. Next step: The house and the senate will meet to reconcile their bills. After that the bill heads for the White House for the President's signature and enactment of the legislation. Everybody please keep your prayers and positive thoughts focused upon Capitol Hill.

US Senate Passes FASTER Act, Brings Mandatory Sesame Labeling One Step Closer

FARE Activists in front of U.S. Capitol Mar 2020

S 3451 will add sesame as the ninth major allergen and prioritize food allergy research; bill now heads to the House for consideration

By News Wire ~ 3rd Party Press Release
December 10th, 2020

Today, FARE (Food Allergy Research & Education), the world’s leading non-governmental organization engaged in food allergy advocacy and the largest private funder of food allergy research, announces the quick action and unanimous passage of The Food Allergy Safety, Treatment, Education, and Research (FASTER) Act of 2020, S. 3451 by the U.S. Senate. Since the bill’s Senate introduction on March 12, FARE has worked extremely closely with the Senate Committee on Health, Education, Labor, and Pensions (HELP) and the House Committee on Energy and Commerce, as well as co-sponsors Senators Tim Scott (R-SC) and Chris Murphy (D-CT) to move this legislation forward.

“More than 1.5 million Americans are allergic to sesame, and they and their family members live in constant fear and anxiety that sesame may be hiding in the food products they buy,” said Lisa Gable, chief executive officer of FARE. “With today’s Senate passage, ushered forward by the incredible leadership of Senator Tim Scott and Senator Chris Murphy, a critical new law that will improve the lives of those with food allergies is one step closer to becoming a reality.”

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Study: Anaphylaxis Spikes During Halloween and Easter

Study: Anaphylaxis Spikes During Halloween and Easter

Dave Bloom at regularly provides timely information to families with life-threatening food allergies.

Pumpkin with Easter Bunny Carving

By Dave Bloom
October 1st, 2020

A study published on September 21st, 2020 in the Canadian Medical Association Journal determined that anaphylaxis in children spikes during Halloween and Easter and that for tree nuts, most cases occurred in children that were previously undiagnosed.

Co-authors Dr. Melanie Leung and Dr. Moshe Ben-Shoshan provided the rationale for conducting the study:

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The Allergy Mom® Melissa Scheichl Provides Education and Support

Author, educational presenter, clinical social worker, psychotherapist and advocate are just a few of the many roles that Melissa Scheichl occupies. All these roles came about from being the mother of children with severe allergies. Her journey of learning and experiencing the impact of life threating allergies on her children propelled her to create, in 2010, the website and associated blog at Since then Melissa has helped provide support and a forum for families to share their experiences as well as finding ways to educate the public about life threatening allergies.

The Allergy Mom® Melissa Scheichl Provides Education and Support

Melissa Scheichl

By Kristen Stewart
September 9th, 2020

Growing up Melissa Scheichl (aka The Allergy Mom®) of the Greater Toronto Area of Ontario, Canada, had both seasonal and food allergies and her mother suffered a dangerous anaphylactic reaction to a bee sting. As challenging and scary as these experiences were, however, allergies did not become a major focus of her life until her children were born almost 16 and 14 years ago.

“As a mom, nothing is more important than the health and well-being of your children,” she said. “My son Andrew's severe allergies to dust, dog dander and environmental allergies educated me on how to make our home and lives safer when dealing with environmental allergies. I learned about eczema, indoor air quality measures and how to alleviate seasonal and environmental allergy symptoms.” As if that wasn’t enough to handle, several years later her daughter Kate was born and diagnosed with severe life-threatening food allergies and asthma.

Melissa and her family watched Kate constantly, making sure she didn’t put goldfish crumbs or anything else dangerous in her mouth. However, just before her third birthday she had a bite of a granola bar that contained almonds. Despite testing negative to tree nuts on a skin test they quickly learned ingesting a food could cause a much different reaction. She suffered a dangerous attack of anaphylaxis.

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Working for Allergy Awareness!

For children with food allergies, “a normal childhood” can be difficult. It is also something that many parents try desperately to provide. That is easier said than done. From diligently examining ingredient listings, to educating friends, family and school officials about their children’s specific allergies and treatment, it can be challenging. It also requires enlisting the children early on to become their own advocate because Mom or Dad will not always be there. That is the wonderful story of Maya Konoff and her mom Jill Mindlin. Since her young daughter was learning to read a list of ingredients, Jill was educating and advocating for Maya and others about food allergies. Maya has learned those lessons; she has succeeded in becoming a strong advocate for young people with food allergies. Read their amazing story here.

Maya Konoff (L) and Jill Mindlin

Maya Konoff and Her Mom Jill Mindlin Talk Anaphylaxis, Advocacy and Living Each Day to the Fullest

By Kristen Stewart
August 17th, 2020

"Read the 'gredients" was one of the first full sentences Maya Konoff spoke as a toddler over 15 years ago — and it was just the beginning of the lifelong advocacy she and her mother Jill Mindlin have undertaken for herself and others after she was diagnosed with severe food allergies at nine months old.

Maya had many serious reactions particularly between the ages of 1 and 4 and was diagnosed as allergic to all dairy, eggs, peanuts, tree nuts, sesame, shellfish, peaches and mustard. Naturally Jill found this scary and stressful but rather than becoming overwhelmed she got to work. She vowed to protect her daughter — and to not let her miss out on anything just because of her food allergies.

"It involved a tremendous amount of work," Jill says. "I really worked part time my whole career because I always said my first job was keeping her safe. My second job was practicing law."

While some parents go the route of saying no to particular activities in order to avoid possible exposure to allergens, Jill took the opposite approach. She believed anything they wanted to do was possible. It just took a good dose of advanced preparation.

The mother-daughter duo joke Maya's older brother was the "starter kid" and as he began each new school Jill met with officials to tell them about her daughter who would be coming two years later so that they had everything in place to keep her safe by the time she arrived.

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IOA Helps Improve Access to EAI Devices in Indiana

We know that Anaphylaxis, the life-threatening allergic reaction, can be successfully treated with an epinephrine auto-injector (EAI). Without an EAI, the results are often tragic. Many families that have experienced this tragedy are working to promote awareness of anaphylaxis and the need for improved access to EAI’s. In Wisconsin, this has been the work Angel and George Mueller to honor of their 18-year-old son Dillon who died of anaphylaxis after being stung by a bee. When Tabitha Arnett, the Executive Director of the Indiana Osteopathic Association (IOA), met Angel, she was moved by her story and her efforts. Inspired and using Wisconsin’s “Dillion’s Law” as a model, Tabitha successfully created a coalition to help provide increased access to EAIs in Indiana.

IOA Helps Improve Access to EAI devices in Indiana

Tabitha Arnett, Indiana Osteopathic Association's Executive Director
Tabitha Arnett, Indiana Osteopathic Association's Executive
Photos used with permission by Indiana Osteopathic Association.

New Law Expands Access to Epinephrine Auto-Injectors

By Kristen Stewart
July 15th, 2020

Anaphylaxis, a life-threatening allergic reaction, strikes about 1 in 50 people in the United States. The good news is it can be treated — but only if there is an epinephrine auto-injector (EAI) immediately at hand. Some states including Indiana are working to make that goal a more frequent reality.

While many people with diagnosed serious allergies carry their own EAIs, life isn't perfect and sometimes they can be forgotten. Other individuals may be allergic but not even know it as in the case of insect allergies where up to half of people who died from a sting had no history of a previous reaction. There is no doubt the more epinephrine auto-injectors available in society, the more lives that can be saved. Enter Indiana's new law HB1207.

While institutions such as schools have previously been able to carry epinephrine auto-injector devices for urgent use, most need for this life saving intervention is more immediate according to Dr. Brian H. Black, President of the Indiana Osteopathic Association (IOA) who practices Emergency Medicine at Putnam County Hospital. "This law was needed to expand immediate availability anywhere, for those who may not even know they need it. Anaphylaxis is a true life-threatening event that can threaten an airway in minutes."

"The Indiana Osteopathic Association is proud to have led the charge at the state level in pushing through this urgent measure," said Dr. Black. "Our board is committed to assisting in ongoing awareness and education on use of epinephrine autoinjectors by trained public members."

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Family Food Allergy Foundation Memorializes Elijah-Alavi

The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis. The Allergy Advocacy Association worked closely with his parents on the successful passage of Elijah's Law in September 2019. This law provides the framework to establish guidelines for daycare providers for the prevention of and response to anaphylaxis.


Silvera Family Raises Awareness of Food Allergies in Childcare Facilities

By Kristen Stewart
June 8th, 2020


It's just one little word, only three letters long, but it still has the power to break the heart of Thomas Silvera every time he uses it in reference to his son Elijah-Alavi who passed away at the age of three after an anaphylactic reaction.

"I think about the world of potential before him," says Thomas. "I think about his bright spirit that so many were robbed of experiencing. I think about his smile. I think about his best friend, brother, and my eldest son Sebi, and the life that they will no longer have together as a dynamic duo."

November 3, 2017 began like any other day with Elijah going to preschool in New York City. He had food allergies including dairy as well as asthma so the school had written and verbal instructions including asthma and food allergy action plans and his doctor's instructions about symptoms to look out for. Thomas and his wife Dina Hawthorne-Silvera had also given the school a list of foods Elijah should not be fed.

Despite these many precautions, on that day Elijah was given a grilled cheese sandwich. To make matters worse school personnel did not tell Elijah's mother what he had eaten and only said he was having an asthma attack. School personnel didn’t call 911 and didn’t administer epinephrine.

Thomas and Dina were devastated but also inspired to make a difference. "I think about how the moment where his life ended was also the moment that my life, quite literally, changed forever," says Thomas. "For my wife and I, the way this was, was us coming up from our grief deciding that Eli's life would be used to change law, policies, and practices." In short, they don’t want any other families to experience what they went through.

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Dillon Mueller Memorial Fund Helps Save Lives

This story about the death of Dillon Mueller of Wisconsin reminds us of Ruthie T. Cornell, our founder Jon Terry’s sister. She also died from a bee sting and did not know she was allergic. Like George and Angel Mueller, we have worked tirelessly to have legislation enacted. We want everyone from bus drivers to first responders and restaurant workers to have access to non-patient specific epinephrine. And just like Dillon’s parents, we conduct training sessions for anyone who wants to learn what to do in an anaphylaxis emergency and how to use an epinephrine auto-injector (EAI) device. Dillon’s family knows of at least 7 people whose lives were saved because of their efforts.

Dillon Mueller Memorial Fund Helps Save Lives

Dillon Mueller on Dirt Bike

Fund Helps Increase Availability of Epinephrine in Wisconsin

By Kristen Stewart
May 14th, 2020

By the time he turned 18 years old, Dillon Mueller of Mishicot, Wisconsin had already spent years making an impression on his family, friends, and community.

He was an award-winning dirt bike racer since the age of 6, an Eagle Scout, and a member of Future Farmers of America. He was so beloved the crowd chanted "Do It for Dillon" to raise the bids when he volunteered his services at a fundraising auction. He made a difference in quieter ways too. He showed a genuine interest in others and befriended everyone at school from the autistic kids to the quarterback to the teachers. He was also the first in line to help anyone in need. "Even though he was in his barn clothes, if somebody wanted help, he'd be off and running with cow poop still on his shoes," remembers his mother Angel.

The youngest of Angel and her husband George's three sons, Dillon was supposed to be the seventh generation to run their family farm. Instead he is leaving a different kind of legacy — one of donated organs and as the inspiration for the Dillon Mueller Memorial Fund which works tirelessly to provide greater access to epinephrine in Wisconsin and around the country.

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Now What? A Layman’s Appraisal of Covid-19…

We hate to pile on with the doom and gloom, but this article describes the current situation and all the possible after-effects on such things as funding for charitable causes. Since asthma sufferers might be at increased risk if exposed to the virus, we are including links to some excellent webinars for all on practical treatment suggestions to those exposed to COVID-19. Meanwhile we remain hopeful about upcoming legislation at both the federal and state levels to address the specific needs of those living with severe allergies such as requiring training and awareness at restaurants.

As we hear more positive news about medications that work as well as vaccines, we will be sure to pass it on!

Now What? A Layman’s Appraisal of Covid-19…

Allergy Advocacy Association Logo Covid-19 Question Marks

…how it effects Allergy Advocacy and….well, everything else, too

By Jon Terry, founder
April 14th, 2020

Greetings.  At this time of international crisis, I sincerely hope all our readers are healthy and safe.

The coronavirus pandemic has impacted almost everyone around the globe.  So many serious questions remain unanswered. How many lives will be lost? How many more individuals will become infected?  How long will so many people need intensive medical care?  When will the number of people at risk for COVID-19 begin to decline? (Who knows?)

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FARE & Friends Making the Case on Capitol Hill

Two days of attending presentations and advocating with our legislators in Washington, DC gave us a very positive outlook on the future of protecting our love ones who have life-threatening allergies. Read all about the topics discussed and the specific legislation we are advocating for, along with numerous photos of the 150 people of all ages who attended. Next year FARE hopes to fly in five hundred activists and advocates, so Washington will know we will not be ignored!

Members of the New York State FARE contingent at US Capitol building

Edited by Jon Terry
March 11th, 2020

Greetings. On March 3rd and 4th the Food Allergy Research Education (FARE) organization hosted the “Courage at Congress Advocacy Day to Fight Food Allergies.” Your Allergy Advocacy Association proudly participated in conference and lobbying activities.

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