VTEM Banners
VTEM Banners
VTEM Banners
VTEM Banners

E-Greetings from the Allergy Advocacy Association

April 2018

Will April showers (and flurries!) bring May flowers? We certainly hope so. This month we offer updates on various studies regarding how to prevent and treat anaphylaxis from food or other allergies. And since this is the time of year to sign up kids for summer camp, we offer some excellent advice for choosing the right one that will keep your child safe.

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.

Wishing you a very happy spring,

Jon Terry
Founder, Allergy Advocacy Association 

A Warning Bell will Ring in my Head!

"A Warning Bell will Ring in my Head!"

Trevor Leinenbach is doing an excellent job in managing his allergy to milk and can serve as a great example to teens everywhere. Thanks to the efforts of his mother Joy, they helped to start the support group, Food Allergies Coping Teaching and Supporting (FACTS) in Fairport, NY. Read here about the strategies Trevor uses to avoid anaphylaxis attacks, and the great support he receives from his college as well as friends and family.

Trevor Leinenbach discusses living with food allergies and asthma

Joy and Trevor Leinenbach; March, 2018
Joy and Trevor Leinenbach; March, 2018.

By Jon Terry
April 12th, 2018

Trevor Leinenbach has lived his entire life with life-threatening food allergies and asthma. He and his family, particularly his mother Joy, have spent many years educating themselves and others about the dangers of anaphylaxis. He recognizes the importance of being a role model for other young men facing many of the same issues he deals with day after day. Now attending Clarkson University in the northern most area of New York State, Trevor recently shared a few of his life experiences at an allergy support group. This support group, Food Allergies Coping Teaching and Supporting (FACTS), has bi-monthly meetings in Fairport, NY. Partly initiated by Joy, FACTS has helped many parents and kids at risk for anaphylaxis. Here are a few excerpts from my meeting notes. 

Continue Reading

Life-Threatening Allergic Reactions Rising in Children

Your Allergy Advocacy Association continues to recommend that “when in doubt, take it out.” This article discusses a report by Blue Cross Blue Shield that found the number of severe allergic reactions in children reported by hospitals have more than doubled between 2010 and 2016. The article includes signs and symptoms to look for in an impending anaphylaxis attack and suggests “If you think about using an EpiPen, go ahead and use it if you notice any of these signs and symptoms.” Most importantly, Dr. Anna Volerman of the University of Chicago Medicine says to make sure that your child has “a really strong understanding of the allergy, and feels comfortable speaking up and saying, ‘I’m allergic to X, is there any X in this food item?’”

Life-Threatening Allergic Reactions Rising in Children

Hands Holding Two EpiPens Together
Photo Credit: Andrew Mangum for The New York Times

By Perri Klass, M.D.
APRIL 9, 2018

Anaphylaxis is the scary end of allergy, the kind of reaction that can kill. It can happen almost immediately after the exposure — being stung by the bee, eating the peanut — and it can move fast. In anaphylaxis, your immune system turns against you with a vengeance, revs up and releases histamines and other chemicals that set off a range of dangerous physiological changes.

Continue Reading

Are Schools Ready for Severe Allergic Reactions?

The good news is that a recent survey found 81% of school nurses stock epinephrine to use in an emergency for any child. The bad news is epinephrine was much less likely to be available for after-school activities or for travel with student groups outside of school. This is especially concerning since up to 19 percent of anaphylactic reactions during the school day may occur outside of the school building or on field trips. Whenever your child is scheduled for outside activities, make sure they have their own EpiPen with them and speak with chaperones and coaches so they know what to do in an emergency. An EpiPen should be available for use on anyone, as many are not even aware they have an allergy, such as to bee stings. School nurses also reported that allergen labeling could be improved for school lunches.

Are Schools Ready for Severe Allergic Reactions?

Study Sees Key Gaps

School Nurse
Photo Credit: Istock

By: Mariam Matti
April 4, 2018

A majority of school nurses report being trained to handle severe food allergy reactions, and most have stock (or unassigned) epinephrine available as a tool.

Underscoring the importance of those factors, a national survey of school nurses reveals that one-third of the nurses had to deal with at least one severe reaction in the past year.

Continue Reading

Advice on Attending Summer Camps with Food Allergies

It’s that time of year again! If you plan to send your child to summer camp, there is much research to be done. The author of this article suggests you make an in-person visit to the camp and to not go by “just what they say, but what you see and even how you feel” in order to choose the right camp for your child. She also provides some excellent questions to ask before you sign your child up for a camp.

Last summer a volunteer counselor at a local Boy Scout camp got stung by a hornet, and had no idea he was allergic. If an EpiPen had not been on hand, the results could have been devastating.

Advice on Attending Summer Camps with Food Allergies

Kids At Camp With Sailboat
Photo Credit: Istock

By: Gina Clowes
Originally published July 19, 2016,
www.allergicliving.com

Follow these tips to research safe adventures for your allergic child.

From daytime activities to sleepaway journeys, summer camp can create lifelong memories and give parents a brief respite. Of course, adequate planning is essential when food allergies are on the table, but sometimes simple observation and a mother’s intuition play an even bigger part in assessing the safety of a situation.

Continue Reading

The information provided on this site is in no way intended to be a substitute for medical advice,
diagnosis, or treatment with a licensed physician.
The Allergy Advocacy Association is a 501(c)(3) non-profit, tax-exempt organization.
Copyright 2018 © Allergy Advocacy Association, Inc. All rights reserved.  Terms & Conditions