E-Greetings from the Allergy Advocacy Association

August 2018

Here in western NY the summer season is coming to a very pleasant conclusion. We have had lots of warm sunshine and hot temperatures and finally some rain showers helping to green up our lawns and (maybe) cheer up local farmers and agri-business people, too. When fall arrives in a couple of weeks, our association will be ready to announce new projects that we believe will prove very exciting for one and all. We are very appreciative for all the support and encouragement we have received from so many people who regularly log on to our Website. So please stay tuned!

Before the little yellow school bus comes down your street in September, this is the perfect time of year to get everything in place at school if your child has serious allergies. Meet with the principal, school nurse, teachers and especially after school coaches and other activity directors to make sure they know what to do in an emergency.

We wish you a wonderful rest of the summer!

Here is a reminder of an important volunteer research opportunity:

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.

Jon Terry
Founder, Allergy Advocacy Association

Patience Plus Persistence Equals Progress!

Occasionally it’s nice to sit back and take stock of all that your association has accomplished in the recent past—and all that still needs to be worked on. Our founder Jon Terry describes what your association has been working on since 2011 but be assured we do not plan to rest on our laurels. We plan to expand our education and funding efforts with the Epi Near You New York program, and continue our work to support lower priced epinephrine auto-injectors. You can read the full article here.

Patience + Persistence = Progress!

Jon Terry holding photo of his sister, Ruth Cornell

Update on Our Latest Accomplishments and Plans for the Future

By Jon Terry
August 8th, 2018

As the summer moves quickly towards fall, September 23rd is fast approaching. On that day it will be nine years since my sister Ruth T. Cornell died from a fatal attack of anaphylaxis after being stung by a honey bee. Keeping that in mind, this seems like a good time to share with all our affiliates and supporters some ideas of where our association is headed. To do that I would like to list a few milestones we have already passed in 2018.

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Opinion: Airlines Need to Get Serious About Food Allergies and In-Flight Auto-Injectors

This is a very frightening article on what could happen to someone experiencing anaphylaxis on an airplane flight. If you have a known food allergy you most likely carry your own epinephrine auto-injector device, but if it’s a first time allergic reaction you will have to hope someone on the plane has one and will lend it to you. Otherwise there would need to be a doctor or nurse on the plane who knows how to administer epinephrine with a vial and syringe, and as this article testifies, even allergists were unsure of what the dosage should be according to someone’s age. We are all for efforts to require airlines to stock EAI devices just like they do automatic electronic defibrillators (AED).

Opinion: Airlines Need to Get Serious About Food Allergies and In-Flight Auto-Injectors

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Nurse Kellie Hopkins stepped in to give Luca an auto-injection during his in-flight emergency. Photo: Francine Ingrassia

By Lianne Mandelbaum
July 24, 2018
This article is from the Summer 2018 Allergic Living magazine.

Kellie Hopkins was buckled in for the plane ride on February 27 and about to watch a movie when she heard the public address announcement; the flight crew were asking for help from a medical professional.

Hopkins, a nurse, rushed from her seat and was soon attending to Luca, a 10-year-old from New York City, who had eaten one cashew. Though his mom, Francine Ingrassia, had never known her son to have a food allergy, Luca quickly began to experience chest pain, stomach pain and increased difficulty breathing.

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FDA Approves First Generic Epi-Pen(TM) In Blow To Mylan

At long last, a potentially less expensive epinephrine auto-injector (EAI) device may be available to consumers very soon. TEVA Pharmaceuticals has received US government approval for a generic version of the Epi-PenTM originally made and marketed by Mylan Pharmaceuticals. Additional generic devices are on their way as well. The existing market for EAI devices is very large; different brands competing against each other could lead to lower prices. Our association fully supports any and all efforts aimed at better regulating healthcare costs for all Americans.

FDA approves first generic Epi-PenTM in blow to Mylan

VibexTMAutoInjector 361x189 
TEVA Antares VibexTM epinephrine auto-injector device

FDA approves TEVA generic version of the Epi-PenTM

By Nathan Bomey
USA TODAY
Aug. 16, 2018

The EpiPen is getting a fresh dose of competition.

The Food and Drug Administration on Thursday approved what it described as the first official generic version of the EpiPen, a life-saving treatment for severe allergic reactions.

The generic device's seller, Teva Pharmaceuticals, is a rival to drug maker Mylan's brand-name version.

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Coach of NFL Buffalo Bills Raises Food Allergy Awareness

It’s always nice when an NFL head coach takes time from his busy schedule to help bring attention to food allergies. Last year the NFL had a “My Cause, My Cleats” program where players and coaches customized a pair of sneakers to bring attention to a cause. Coach Sean McDermott of the Buffalo Bills chose food allergies on behalf of his children, and eight-year old allergy-sufferer Jared Saiontz wrote to thank him. Jared had the thrill of his life when he was invited to the Bills’ training camp at St. John Fisher and met Coach McDermott as well as owner Terry Pegula and several players. Thanks Jared and Coach McDermott for bringing attention to this important cause!

Coach of NFL Buffalo Bills Raises Food Allergy Awareness

Left to right: Terry Pegula, Jared Saiontz, Sean McDermott
L-R: Terry Pegula, Jared Saiontz, Sean McDermott

By Claire Carpenter
July 27th, 2018

McDermott inspires young fan

For the NFL’s “My Cause, My Cleats” initiative last season, Bills Head Coach Sean McDermott sought to raise awareness for food allergies - a cause that hits home for him and his family. To show his support, McDermott customized his own pair of sneakers, hoping to make a difference by advancing the conversation. While he may not have known it at the time, McDermott achieved that and much more. 

For eight-year-old Jared Saiontz, who has severe food allergies and is an advocate in his community for the cause, McDermott’s message was well-received. Able to relate, Saiontz expressed his joy to his mother, Stacey. Beaming with excitement, Saiontz carefully crafted a letter to McDermott, explaining his story and expressing his thanks. 

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