Family Food Allergy Foundation Memorializes Elijah-Alavi

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.    Read the article here.

E-Greetings from the Allergy Advocacy Association

March 2018

Spring (?) greetings! Although there is still snow on the ground in Rochester, our thoughts turn to a busy spring season. The Allergy Advocacy Association will be participating with other activists at the New York State Capitol in Albany on Wednesday, May 16. Our Food Allergy and Anaphylaxis Awareness Event will be at the entrance to the Legislative Office Building located in the capitol concourse. We sincerely hope that you can join us.

If you can help here is a reminder of a couple of research opportunities:

If you are pregnant or just had a baby, The Department of Pediatrics, Division of Allergy and Immunology at the University of Rochester is looking for a study participant just like you! For more information please call 585-275-8991.

Become a FARE Advocate for Research!
Food Allergies Research and Education (FARE) has collected some incredible data since the launch of the FARE Patient Registry, with more than 2,000 patients enrolled. But they need to grow the registry further, because more data means greater opportunities for breakthroughs.

Add your history to our growing database of food allergy patients by completing surveys and more.

Should Pharmacists in NYS write Rx for Epinephrine?

Many of the initiatives your Allergy Advocacy Association was successful in implementing were from legislation that had been passed in other states. Our next goal is an idea from the state of Idaho where pharmacists are now allowed to write prescriptions for epinephrine, thanks to the efforts of a pharmacist whose son has food allergies. You can read the full article here.

Should Pharmacists in NYS write Rx for Epinephrine?

>Starla and Mitchell Higdon at the Idaho state capitol
Starla and Mitchell Higdon at the Idaho state capitol.

By Jon Terry
March 12, 2018

After founding the Allergy Advocacy Association eight years ago, I knew I would have to imitate the already existing ideas and creations from other people’s work. Why did I decide to do this? Because I was determined to do whatever it takes to raise awareness of the dangers of anaphylaxis. To become an effective public advocate, I would have to learn about new things but also copy many things that already existed. There was no good reason for our association to re-invent the wheel, so to speak. And when it came to advocate for new legislation in my home state of New York, I searched for successful laws already enacted in other states. If it “plays in Peoria,” why not try it in Albany as well? Sure, some folks might accuse me of stealing promising ideas from others. But I prefer to think of the process not as larceny, but as flattery instead.

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District School Bus Rules Did NOT Contribute to the Amanda Huynh Tragedy

This sad story reinforces the importance of school bus drivers being able to carry and administer epinephrine in an emergency. After a student had a severe reaction after eating a granola bar, 15 minutes were lost before the bus reached the nearest school for the nurse to administer epinephrine, and the young girl died 2 days later. It is believed that the delay in receiving the drug may well have contributed to Amanda Huynh’s death. We can all learn from this tragedy and for policies that should be implemented in every school district.

District School Bus Rules Did NOT Contribute to the Amanda Huynh Tragedy

Amanda Huynh

By Dave Bloom
March 13th, 2018

Update Tue, March 13, 2018 @ 2:50PM EDT: Given a retraction from our original source and Allergic Living’s recent update regarding the Amanda Huynh tragedy, we’ve made a correction to the previous version of this article. The district does allow self-carry of epinephrine by students, but in Amanda’s case, she had stopped carrying an auto-injector the year prior. While we do our best to verify our sources to provide timely, usable information, our reporting was incorrect. We offer our sincere apologies to our readers for the error.

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Anaphylaxis in Very Young Kids Can Often Be Severe and Under-Recognized, Study Finds

An associate professor of pediatrics at Baylor College of Medicine surveyed 600,000 pediatric intensive care units and found that the risk of anaphylaxis in children to be higher than previously thought, even in young babies. With a mortality rate of 1 percent, peanut and dairy reactions were implicated as the leading causes of death. The author believes that if more physicians on the front lines quickly recognized and treated anaphylaxis, perhaps severe reactions could be minimized.

Anaphylaxis in Very Young Kids Can Often Be Severe and Under-Recognized, Study Finds

Dr. Carla Davis presents a poster at the AAAAI/WAO meeting.
Dr. Carla Davis presents a poster at the AAAAI/WAO meeting.

By Gwen Smith
March 14, 2018

An analysis of data from 600,000 pediatric intensive care units across North America reveals the risks of anaphylaxis in children to be higher than has previously been appreciated, even in young babies, according to one of the study’s authors.

The study, which is the largest report to date on the characteristics of anaphylaxis in children, showed that 2,000 children were admitted to pediatric ICUs between 2010 and 2015.

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