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Articles for Advocacy

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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Allergy Advocacy Association: Albany Reset

Albany Legislature building

After much consideration about where we are as an organization and how we continue the work towards our mission, we’ve decided to forgo this year’s trip to Albany. We’ll work closely with the allergy community to better understand their challenges as they manage their allergies and how we can better support them with legislative outreach and other advocacy activities.  

Issues of anaphylaxis emergency school teacher training; restrictions upon pharmaceutical pricing policies and protecting families with food allergies in restaurants are very important to our community.  We look forward to working with the Monroe County allergy community, health care professionals and NYS representatives and their staffs to support legislation to make it easy to keep our friends and family safe during an episode of anaphylaxis, no matter where they are. This information will be used to focus our attention on the right legislation as we continue our work in Albany next year.

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Announcing our Albany Allergy Awareness Event

We have had much success in the past with our Food Allergy & Anaphylaxis Awareness Days in Albany, and another one is scheduled for May 3. We set up a table in the concourse entrance to the Legislative Office Building and speak to every legislator that walks by. When we have families join us it adds much validity to our cause as it hits home how allergies can affect anyone’s everyday life. Below are some of the legislative initiatives we are supporting this year. Call or write if you would like to join us!

A3 Staff and Friends In Albany 2016

By Jon Terry
March 14th, 2017

Greetings from Jon Terry, the founder of the Allergy Advocacy Association. Concerning anaphylaxis, life-threatening allergies and epinephrine, important legislation is again being proposed during the current session of the New York State legislature. Under consideration are new laws for anaphylaxis emergency school teacher training; restrictions upon pharmaceutical pricing policies and protecting families with food allergies when they dine out at restaurants or fast-food service vendors.

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The Viaskin Peanut Patch: Will It Help Prevent Anaphylaxis?

Local allergist Dr. Shahzad Mustafa has been closely monitoring clinical trials for a new peanut patch that would help decrease the risk of an allergic reaction after accidental ingestion. Worn on the back or the inside of the upper arm, there were very few side effects in a recent study except for mild skin irritations. After 1-2 years of using the patch, close to 50% of the 74 participants saw a 50% improvement in peanut tolerance. DBV Technologies hopes to have the product approved by the Food and Drug Administration and marketed by 2018.

The Viaskin peanut patch: Will it help prevent Anaphylaxis?

Viaskin Peanut Patch

By Janet Goldman
February 11th, 2017

DBV Technologies has been developing the Viaskin Peanut Patch, a new method for preventing anaphylaxis. If used appropriately, the patch can increase tolerance to peanuts. The patch helps peanut allergic individuals who accidentally ingest or are accidentally exposed to peanut protein. Through immunotherapy, the patch can help prevent symptoms from an accidental exposure. However, even with a patch, users should still always carry epinephrine and strictly avoid peanuts.

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Open Letter to Malia Obama

The deaths of young adults from anaphylaxis is a major concern for our association.  We need national leadership on this issue.  Who better than one of the most prominent public figures with peanut allergy in that age group.  That is why Jon Terry has asked Malia Obama for help. 

An Open Letter to Malia Obama

Malia Obama

By Jon Terry
January 13, 2017

Dear Ms. Obama;

Greetings.  I sincerely hope you and your family are doing great and looking forward to a happy and prosperous new year.  And also that you are successfully managing your health particularly your allergy to peanuts.

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Big Jon's Holiday Gratitude List

As we wind up yet another year, it’s the perfect time to sit back and reflect on all that has been accomplished in 2016. But of course nothing would have been possible without the hard work and support we receive every day from so many in our community. Here’s our founder Jon Terry’s list of people and organizations that have been especially helpful this past year in reaching our ongoing vision of “Not another life lost to anaphylaxis - not another life lost ANY life-threatening allergies!”

Big Jon's Allergy Advocacy Association Holiday Gratitude List

Xmas Saying From Da Grinch 2016

By Jon Terry
December 7, 2016

Happy Holidays! I sincerely hope all of our readers have had a great year and are looking forward to 2017. At this particular 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 my “thank you” list below.

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Many Families In The Dark About Cheaper EpiPen Alternative

Did you know there is a less expensive alternative to Mylan’s EpiPen? A generic epinephrine auto injector of another brand called the Adrenaclick, it has been on the market since 2013. The cash price is as much as $430 cheaper than the EpiPen. But it’s important that your doctor write the prescription in a certain way or the pharmacist won’t be able to fill it with the less expensive brand. The prescription should say “‘the generic epinephrine auto injector,” not “EpiPen or generic equivalent.”

Generic Epinephrine Injector USP packages

Many Families In The Dark About Cheaper EpiPen Alternative

By Dr. Mallika Marshall
November 16th, 2016

BOSTON – Diagnosed with a severe peanut allergy, one wrong bite could be deadly for 10-year-old Dylan Frazier of Duxbury. That’s why his mom, Kristen, keeps EpiPens everywhere. “We keep one in the cafeteria. We also keep one in the classroom and in the sports bag,” she said.

The Fraziers’ insurance doesn’t cover the cost of all those extras, so they end up with hundreds of dollars in out-of-pocket costs just have that peace of mind.

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Remembering Ruthie With Epi Everywhere

In memory of Jon Terry’s sister Ruthie, we are launching our first major fundraising campaign in order to help protect those with life-threatening allergies. We’ve already seen results in saving a life thanks to a donation of epi-pens we made to the local Boy Scouts Association last summer. Will you help us continue our important work?

Remembering Ruthie With Epi Everywhere

Ruthie Cornell

By Jon Terry & Suzanne Driscoll
October 14th, 2016

As many of you probably know, my sister Ruthie Cornell died of anaphylaxis as a result of a bee sting seven years ago. Ruthie was a life-long, avid gardener, but she didn’t know she was allergic to bee stings. Had epinephrine been on hand via an epi-auto-injector (EAI), she would still be alive. Ruthie would have been 60 years old on May 18 of this year and I miss her every day.

In her honor and to help save others from dying from undiagnosed allergies, I started the Allergy Advocacy Association where we have advocated for epinephrine to be available everywhere. We accomplish this with legislative activities, programs to educate the public about EAIs (using them and keeping them on hand), and providing EAIs to organizations in need. Today I would like to ask your assistance in furthering our goals in these important initiatives.

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