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. Read the article here.
We have been touting the research efforts of the University of Rochester Medical Center in previous issues of our e-newsletter and on our Web site. The leader of this particular project, Kirsi Jarvinen-Seppo MD, discusses the ways and means of she is using to better understand the development of life-threatening allergies in America.
Old Order Mennonites sacrifice a lot of 21st century conveniences: electricity, motorized vehicles, modern dress and entertainment. One thing they don't need to worry about, though, is peanut allergies.
Allergies of any kind, in fact, are nearly nonexistent in Mennonite communities like the one in Penn Yan, Yates County, and they are five to 10 times less likely to develop asthma. Now, a University of Rochester Medical Center researcher has a $2.4 million grant to better understand why that is.
At the start of the New Year, here is our association’s Gratitude List
January 4th, 2018
Happy New Year! I sincerely hope all of our readers have had a great holiday season and are looking forward to 2018. At this time of year it is a regular occurrence for individuals and organizations to offer up gratitude lists of various sorts. Most lists recount events from the past year that were particularly hopeful or meaningful. That is pretty much what I want to share with all the supporters and affiliates of the Allergy Advocacy Association. I firmly believe that we do have a lot to feel grateful about. Please see our “thank you” list below.
Thank you to all of our staff and members of our board of directors for all of their time and expertise in support of our advocacy efforts.
Thank you to the allergists who have volunteered their valuable time to participate in our public events and presentations.
Thank you to all the members of Food Allergies Coping Teaching Supporting and the Greater Buffalo Food Allergy Alliance. Both of these family support groups are doing invaluable work for all of their members here in western New York.
Thank you to Governor Andrew Cuomo and the NYS Legislature for enacting the “Bus Driver” law of 2017 Chapter 200. The bill was sponsored by Senator Steven Murphy and Assemblyman David Buchwald. This law allows school bus drivers to administer an epinephrine auto-injector in emergency circumstances. And extra special thanks to Stacey Saiontz of Chappaqua, NY and her sons Elliot and Jared for their patient and persistent advocacy efforts.
Thank you to Angel and George Mueller of Wisconsin for their tireless efforts at raising awareness to the dangers of anaphylaxis. Their governor recently enacted “Dillon’s Law” named after their teenage son, a victim of anaphylaxis after being stung by an insect. The law allows trained individuals to carry epinephrine auto-injectors, more commonly known as Epi-Pens, to be used when someone is having a dangerous allergic reaction.
Thank you to Al Camp, director of security for Saint John Fisher College. Mr. Camp is initiating an epinephrine entity stocking program at his college starting in January 2018. Data shows that non-patient specific epinephrine saves lives, particularly individuals who have NOT been diagnosed with a life-threatening allergy.
Thank you to Theresa Bingemann, MD and Syed Shahzad Mustafa, MD and the Rochester Red Wings baseball team for providing a seating section at Frontier Field that is alcohol free and “peanut-aware!” And thank you to everyone who attended and supported our Food Allergies and Anaphylaxis Day at the ball park last August.
Thank you to Kirsi Jarvenin-Seppo, MD and everyone at the U-R Golisano Children’s Hospital for their research efforts.
Thank you to everyone who made a donation to our Remembering Ruthie fund raising campaign. Your generous support is very greatly appreciated!
Thank you to all the visitors to our Web site and Facebook page, and to all the readers of our e-newsletter. Your encouragement for and participation in our advocacy efforts is essential to all of our future endeavors.
Very best wishes to everyone for a very safe and happy 2018!
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 or sign up here.
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.
After a prolonged struggle Wisconsin residents Angel and George Mueller succeeded in their tireless efforts to enact legislation allowing trained and certified individuals to carry and administer epinephrine in case of an attack of anaphylaxis. Be Strong and BRRAAPP ON! Read the article Epinephrine commonly administered by unlicensed school staff.
It started in 1998 with a proclamation by President Bill Clinton starting Food Allergy Week in May of 2000. From this auspicious beginning Food Allergies Research and Education has grown into a global leader of food allergy research and advocacy. FARE strives to set priorities in food allergy research and advocacy that are supportive to all who work in the allergy community.