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.
Will April showers bring May flowers? (Do snowflakes count?) Your Allergy Advocacy Association held a very informative learning session led by Dr. Kirsi Jarvinen-Seppo, Chief of Pediatric Allergy and Immunology at the UR Medical Center, on April 1 at the University of Rochester’s School of Nursing. One interesting takeaway was in regard to children inheriting a severe allergy from a parent. Dr. Jarvinen-Seppo reports that while these children have a greater chance of developing an allergy, it is usually not from the same type of allergen. “A typical example would be a grandmother with asthma, the father with a shellfish allergy and the child with a peanut allergy. It would be difficult to even know what to start testing the child for.”
Thank you to all who attended and we heartily welcome you to our Association!
Our Association supports annual event at the New York State Capitol
April 15th, 2019
The Allergy Advocacy Association will be making our annual trip to Albany for Food Allergy Awareness Day on Wednesday, May 15, 2019 from 9am – 2pm. This event is sponsored by NYS Senator Gustavo Rivera and AM Thomas J. Abinanti. We will be there supporting individuals and families with life-threatening allergies, starting with a media event at 12:00pm followed by meetings with state legislators later in the afternoon. Please help our important program of AWARENESS, ALERTNESS and ACTION by joining us in our advocacy efforts. Here are all the location details as well as a few of the newly proposed bills intended to improve access to life-saving epinephrine in New York State.
Wish us luck and we hope to see you there!
Food Allergy Awareness Day! NYS Capitol Albany, NY
Legislative Office Building
198 State St, Albany, NY 12210
Wednesday, May 15, 2019 9am-2pm
Exhibit Location: Glass doors
at the LOB entrance on the
Allergy Advocacy Association Donates Funds for EAI devices at Roberts Wesleyan
When college students are living away from home for the first time, it becomes more of a challenge to avoid certain foods and other allergens. We were pleased to donate $1,100 to Roberts Wesleyan College recently for the purchase of three packs of epinephrine auto-injector (EAI) devices to be stocked at various locations throughout the campus. Health Center coordinator Blandine Burks was very grateful to receive our donation and describes how the pens will be used.
Our Association awards grant to stock NPS EAI devices on Campus
By Suzanne Driscoll April 12th, 2019
“Thank you for your generosity, support and breath of life!” says Blandine Burks, Coordinator of the Health Center at Roberts Wesleyan College. The Allergy Advocacy Association was pleased to award Roberts Wesleyan College $1,100 for the purchase of three packs of epinephrine auto-injector (EAI) devices to be stocked, with one for the health center, one for the athletic trainer and one for campus safety.
As authorized by New York’s Emergency Allergy Treatment Act (EATA), the college is making epinephrine available for students, staff and visitors as needed. With a non-specific epinephrine prescription, trained college staff will be able to administer epinephrine to anyone suffering from anaphylaxis.
Ms. Burks heard about the Association’s grant program while attending a training session at St. John Fisher College last fall. Previously, the health center and the athletic trainer split an Epi-PenTM pack with each person taking one pen. At the training given by Dr. Syed Mustafa, they realized in a serious anaphylaxis situation a person usually needs to receive two applications of epinephrine, so they no longer share EAI device packs.
Dave Bloom, CEO of SnackSafely.com, is very concerned about the Trump Administration’s recent efforts to once again try to strike down the Affordable Care Act without any concrete proposals to replace it. While Republicans wisely decided to hold off until after the November elections, many people are worried because food allergies would be considered a preexisting condition.
Earlier this week, the Trump Administration told a federal appeals court that the Affordable Care Act (ACA) — commonly known as “Obamacare” — should be struck down in its entirety. This contrasts its previous assertion that “only” the provisions protecting those with preexisting conditions should be struck down while preserving the rest of the law including the expansion of Medicare.
It doesn’t much matter if you are a red-state Republican or a blue-state Democrat, if you suffer from food allergies, you have a preexisting condition. Your healthcare coverage could be discontinued in its entirety, your policy could be amended to exclude expenses arising from your preexisting conditions, or your premiums could skyrocket, making your insurance too expensive to afford.