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Articles for Advocacy

Announcing Epi Near You New York

Help us spread the word about our Epi Near You New York program. Recently approved by New York State, we will provide training to any restaurant, summer camp or daycare center on when and how to administer epinephrine. Plus, we will give them a non-patient-specific (NPS) prescription, which can be filled at any pharmacy in New York. And for 501(c)(3) organizations, the Allergy Advocacy Association will provide a payment voucher for an epinephrine auto injector, at no cost to the owner. Help us help you save lives!

 

Allergy Advocacy Association Logo

By Staff
May 14, 2018

The Allergy Advocacy Association is very pleased to introduce Epi Near You New York, an educational program to help Monroe County’s small businesses keep their customers safe. This program will enable businesses to stock and administer epinephrine to those who are not carrying their Epinephrine Auto-Injector (EAI) device or weren’t aware of their allergy, leaving them at risk for an attack of anaphylaxis.

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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. 

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Should Pharmacists in NYS write Rx for Epinephrine?

Many of the initiatives your Allergy Advocacy Association was successful in implementing were from legislation that had been passed in other states. Our next goal is an idea from the state of Idaho where pharmacists are now allowed to write prescriptions for epinephrine, thanks to the efforts of a pharmacist whose son has food allergies. You can read the full article here.

Should Pharmacists in NYS write Rx for Epinephrine?

>Starla and Mitchell Higdon at the Idaho state capitol
Starla and Mitchell Higdon at the Idaho state capitol.

By Jon Terry
March 12, 2018

After founding the Allergy Advocacy Association eight years ago, I knew I would have to imitate the already existing ideas and creations from other people’s work. Why did I decide to do this? Because I was determined to do whatever it takes to raise awareness of the dangers of anaphylaxis. To become an effective public advocate, I would have to learn about new things but also copy many things that already existed. There was no good reason for our association to re-invent the wheel, so to speak. And when it came to advocate for new legislation in my home state of New York, I searched for successful laws already enacted in other states. If it “plays in Peoria,” why not try it in Albany as well? Sure, some folks might accuse me of stealing promising ideas from others. But I prefer to think of the process not as larceny, but as flattery instead.

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Local College Implements New York’s Emergency Allergy Treatment Act

St. John Fisher College can serve as an example to colleges everywhere in being proactive to protect students with severe allergies. They are stocking epinephrine throughout the campus and conducting training sessions for security, health care personnel and resident assistants. As the college had three incidences of anaphylaxis last year alone, we are very proud to help in this important endeavor.

SJF College fire and safety officer Al Camp and A3 founder Jon Terry
SJF College fire and safety officer Al Camp and A3 founder Jon Terry

Local College Implements New York’s Emergency Allergy Treatment Act

By Janet Goldman
February 10th, 2018

St. John Fisher College is becoming a role model for local colleges and other public entities in western New York. As authorized by New York’s Emergency Allergy Treatment Act (EATA), the College is stocking epinephrine, making it available for students, staff and visitors as needed. With a non-specific epinephrine prescription, specifically trained College staff will be able to administer epinephrine to anyone suffering from anaphylaxis.

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Wisconsin Governor Scott Walker Signs Dillon's Law Bill

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.

Gov. Scott Walker Signs Dillons Law
Gov. Scott Walker signs the bill for Dillon's Law at Mishicot High School. (Photo: Josh Clark/USA TODAY NETWORK-Wisconsin)

Wisconsin Governor Scott Walker Signs Dillon's Law Bill

By Alisa M. Schafer
Dec. 11th, 2017
MISHICOT, WI

“Dillon’s Law will save lives.”

Gov. Scott Walker said that was the most important sentiment during a bill-signing ceremony Monday honoring Dillon Mueller, who died at age 18 of an allergic reaction to a bee sting.

Walker signed Dillon’s Law on Monday at Mishicot High School, the school Dillon graduated from shortly before his death on Oct. 4, 2014.

“What a powerful way to honor such a remarkable young man … someone who had a zeal for life in every way,” Walker said.

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USAnaphylaxis Summit Report 2017

Our founder, Jon Terry, attended the USAnaphylaxis Summit held in Washington, DC, sponsored by the Allergy and Asthma Network. He came away with some great information to share from leading experts in the field who identified best practices and helped develop call-to-action strategies. Jon believes some great strides are being made in anaphylaxis prevention.

USAnaphylaxis Summit Report 2017

US Anaphylaxis Summit Attendees

By Jon Terry
November 1st, 2017

This past fall I attended the USAnaphylaxis Summit meeting at the National Harbor outside of Washington, DC. The event was sponsored by the Allergy and Asthma Network, for over thirty years the leading national nonprofit organization dedicated to ending needless death and suffering due to asthma, allergies and related conditions. Five years ago, AAN invited a small group of stakeholders to Washington, DC to participate in the first USAnaphylaxis Summit and hear from leading experts, identify best practices and develop call-to-action strategies. This year the Network gathered experts in allergies, anaphylaxis and patient care to collaborate and author a journal article based on the Summit’s presentations.

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Epinephrine Commonly Administered by Unlicensed School Staff

Dr. Michael Pistiner

A study by Dr. Michael Pistiner of MassGeneral Hospital for Children found that epinephrine was often administered in schools by nonmedical staff, and sometimes to students with no known allergy. This reinforces the importance of legislation such as the Nurse Authorized Stock Epinephrine laws and the training of ALL school personnel. This is especially important for schools that do not have full-time nurses.

Epinephrine Commonly Administered by Unlicensed School Staff

By Katherine Bortz
October 20, 2017

CHICAGO —  As many as one in five anaphylactic events among children without known allergies are treated with epinephrine administered by an unlicensed school nurse or staff member, according to a recent presentation at the American Academy of Pediatrics 2017 National Conference & Exhibition.

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Governor Cuomo Signs School Bus Legislation

Governor Cuomo Signs School Bus Legislation

We are very grateful for the leadership role Assemblyman David Buchwald (D-Westchester) and Senator Terence Murphy (R-Westchester) took in helping to pass legislation permitting school bus drivers and other school service providers to administer epinephrine in an emergency. And many thanks go to Gov. Andrew Cuomo for signing the bill so promptly. Now it is up to the New York State Department of Health to move quickly to issue the regulations necessary for timely implementation. We sincerely believe this legislation will help to save many lives over the years. You can read the full article here.

Kids Getting On School Bus

Allows Drivers and Others to Administer Life Saving Epinephrine

Adapted from a press release issued by Assemblyman David Buchwald with additional reporting by Jon Terry
August 22, 2017

Governor Andrew Cuomo has signed legislation sponsored by Assemblyman David Buchwald (D-Westchester) to allow school bus drivers and other contractors providing services to schools to administer epinephrine when a child suffers anaphylaxis shock.

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Penfield NY Boy Saves Father’s Life After A Bee Sting

Penfield NY Boy Saves Father’s Life After A Bee Sting

This story rings close to our hearts, as our founder Jon Terry’s sister died as a result of a bee sting when she was alone at home. Read here about local hero Jamie Kosten who administered an EpiPen to his father after he was stung by bees he was raising.

Jamie Kosten Receives "Do The Right Thing" Award

Jamie Kosten Receives Award

By Suzanne Driscoll
July 20th, 2017

Scott Kosten had been keeping bees in his yard for over 12 years, and never had an allergic reaction to a bee sting. But last May he was stung multiple times and became unconscious from anaphylactic shock. Fortunately, his 12 year old son Jamie was home and knew to call 911 right away. The first thing the operator asked was “Do you know if you have an EpiPen in the house?” Miraculously, the family had the foresight to purchase one to have on hand, “just in case a visitor ever needed it,” Jamie recalls,

Alone and feeling very stressed, Jamie calmed down as the 911 operator told him exactly what to do. He successfully administered the epinephrine auto-injector (EAI) device for the first time, and by the time the EMTs arrived 6-7 minutes later, his father had started to recover.

The 911 operator was so impressed with Jamie’s courage and determination, he nominated him for the Rochester Police Department's "Do the Right Thing" award. The "Do the Right Thing" program is designed to seek out the outstanding youth of the Rochester community who have distinguished themselves as a role model for their peers. They achieve this by committing "random acts of kindness," or by simply "doing the right thing."

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UPDATE: Allergy Safety on NYS School Buses

As the school year comes to an end, it’s the perfect time to focus on ways to keep children with allergies safe on school buses, so we can be all ready to roll in September. We are pleased to report that legislation allowing school bus drivers to administer epinephrine in an emergency was passed by houses of the New York State legislature. Now the bill will be sent to Governor Andrew Cuomo for consideration and (hopefully) enactment. Please support our efforts by contacting him directly to sign the bill.

UPDATE: Allergy Safety on NYS School Buses

Kids Getting On School Bus
Photo by Daniel Hurst

By Kristen Stewart
June 21st, 2017

Good news from Albany!

School busses are two steps closer to being safer for children who suffer from life-threatening allergies thanks to the passage of Assembly Bill A07635 sponsored by David Buchwald and Senate Bill S06005 sponsored by Terrance Murphy. The bill would allow employees of companies that provide transportation for NYS school districts to be able to administer an epinephrine auto-injector in emergency circumstances.

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A Mother Pushes for Allergy Safety on NYS School Buses

What would happen if a child got stung by a bee or ate something he or she was allergic to on a school bus? When every minute counts during an attack of anaphylaxis, a bus driver trained to administer epinephrine could literally save a life. Fortunately, thanks to the efforts of one mother, legislation is being proposed in New York State that would allow employees of companies that provide transportation to be able to administer an epinephrine auto-injector in emergency circumstances.

Stacey Saiontz with her sons Jared and Elliott
Stacey Saiontz with her sons Jared and Elliott

A Mother Pushes for Allergy Safety on NYS School Buses

By Kristen Stewart
May 22nd, 2017

Stacey Saiontz of Chappaqua, New York does everything parents of extremely allergic children do. She brings her son Jared’s food to restaurants and friends’ homes. She wipes down everything from airplane seats and arm rests to playground equipment. And of course she carries Benadryl and an epinephrine auto-injector (EAI) device.

She has also taken her fight to keep her son safe one step further—all the way to the New York state capitol.

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