Originally published in the Democrat and Chronicle on 11/11/18
By Caurie Putnam
Jon Terry of Brockport is an accidental advocate. The founder of the Allergy Advocacy Association never paid much attention to life-threatening allergies until tragedy struck his own family.
His only sibling, Ruth “Ruthie” T. Cornell, died in 2009 at age 53 of anaphylactic shock after being stung by a honeybee at her home in North Carolina.
“Ruthie was an example of the perfect storm of what can happen with anaphylaxis,” said Terry about the life-threatening allergic reaction that can be treated with the medication epinephrine (commonly referred to as an EpiPen). “She had been stung as a child without issues, but something changed. My brother-in-law is a primary care physician, but there was no EpiPen in the house, because there were no prior indicators she needed one.” After Ruthie died, Terry, who is retired from a career in the entertainment design industry, turned his family’s pain into advocacy. He formed the nonprofit Allergy Advocacy Association in 2010 with a mission of preventing anaphylaxis through awareness, alertness and action.
On Nov. 4 he was awarded the 2018 FARE Vision Award, from the Food Allergies Research and Education organization in Washington, D.C. The award recognizes individuals and entities who support FARE in its mission to improve the quality of life and the health of individuals with food allergies and to provide them hope through the promise of new treatments. Jon was recognized in part for the Allergy Advocacy Association’s efforts to pass legislation involving the stocking of epinephrine in schools, providing daycare guidelines for food allergy management, and working at food allergy awareness days for legislators in Albany. Among the group’s current activities, educating restaurants in New York that they’re authorized to have EpiPens on hand (with proper training) in case a diner or employee suffers anaphylaxis. They’re also working on improving signage and menus in restaurants and pushing to get more generic epinephrine products on the market.
“We’ve made a lot of progress educating the public about allergies and anaphylaxis,” Terry said. “However, we have to continue to teach everyone that allergies are not a matter of choice, but of life and death.”
Patrick Morris of Rochester has a cousin with a severe peanut allergy. He met Jon over the summer and has become involved in the organization as its senior adviser for development.
“Jon has done a great job building the organization,” Morris said. “He has taught me so much already. The more you learn about life-threatening allergies the more you realize it’s not a small percentage of people affected, it can happen to anyone.”
The Allergy Advocacy Association will hold its first annual Rochester Allergy Action Awards Fundraising Gala from 6 to 9 p.m. Nov. 15 at ARTISANworks, 565 Blossom Road, in Rochester.
Tickets are $100 per person and are available online or at the door. There will be a dinner, silent auction and awards. One of the awards — the Ruth T. Cornell Award —will be presented for the first time, in memory of Jon’s sister Ruthie.
For more information on the gala and/or Allergy Advocacy Association visit allergyadvocacy association.org.