IOA Helps Improve Access to EAI Devices in Indiana

We know that Anaphylaxis, the life-threatening allergic reaction, can be successfully treated with an epinephrine auto-injector (EAI). Without an EAI, the results are often tragic. Many families that have experienced this tragedy are working to promote awareness of anaphylaxis and the need for improved access to EAI’s. In Wisconsin, this has been the work Angel and George Mueller to honor of their 18-year-old son Dillon who died of anaphylaxis after being stung by a bee. When Tabitha Arnett, the Executive Director of the Indiana Osteopathic Association (IOA), met Angel, she was moved by her story and her efforts. Inspired and using Wisconsin’s “Dillion’s Law” as a model, Tabitha successfully created a coalition to help provide increased access to EAIs in Indiana.

IOA Helps Improve Access to EAI devices in Indiana

Tabitha Arnett, Indiana Osteopathic Association's Executive Director
Tabitha Arnett, Indiana Osteopathic Association's Executive
Photos used with permission by Indiana Osteopathic Association.

New Law Expands Access to Epinephrine Auto-Injectors

By Kristen Stewart
July 15th, 2020

Anaphylaxis, a life-threatening allergic reaction, strikes about 1 in 50 people in the United States. The good news is it can be treated — but only if there is an epinephrine auto-injector (EAI) immediately at hand. Some states including Indiana are working to make that goal a more frequent reality.

While many people with diagnosed serious allergies carry their own EAIs, life isn't perfect and sometimes they can be forgotten. Other individuals may be allergic but not even know it as in the case of insect allergies where up to half of people who died from a sting had no history of a previous reaction. There is no doubt the more epinephrine auto-injectors available in society, the more lives that can be saved. Enter Indiana's new law HB1207.

While institutions such as schools have previously been able to carry epinephrine auto-injector devices for urgent use, most need for this life saving intervention is more immediate according to Dr. Brian H. Black, President of the Indiana Osteopathic Association (IOA) who practices Emergency Medicine at Putnam County Hospital. "This law was needed to expand immediate availability anywhere, for those who may not even know they need it. Anaphylaxis is a true life-threatening event that can threaten an airway in minutes."

"The Indiana Osteopathic Association is proud to have led the charge at the state level in pushing through this urgent measure," said Dr. Black. "Our board is committed to assisting in ongoing awareness and education on use of epinephrine autoinjectors by trained public members."

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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. The Allergy Advocacy Association worked closely with his parents on the successful passage of Elijah's Law in September 2019. This law provides the framework to establish guidelines for daycare providers for the prevention of and response to anaphylaxis.

Elijah-Alavi
Elijah-Alavi

Silvera Family Raises Awareness of Food Allergies in Childcare Facilities

By Kristen Stewart
June 8th, 2020

Was.

It's just one little word, only three letters long, but it still has the power to break the heart of Thomas Silvera every time he uses it in reference to his son Elijah-Alavi who passed away at the age of three after an anaphylactic reaction.

"I think about the world of potential before him," says Thomas. "I think about his bright spirit that so many were robbed of experiencing. I think about his smile. I think about his best friend, brother, and my eldest son Sebi, and the life that they will no longer have together as a dynamic duo."

November 3, 2017 began like any other day with Elijah going to preschool in New York City. He had food allergies including dairy as well as asthma so the school had written and verbal instructions including asthma and food allergy action plans and his doctor's instructions about symptoms to look out for. Thomas and his wife Dina Hawthorne-Silvera had also given the school a list of foods Elijah should not be fed.

Despite these many precautions, on that day Elijah was given a grilled cheese sandwich. To make matters worse school personnel did not tell Elijah's mother what he had eaten and only said he was having an asthma attack. School personnel didn’t call 911 and didn’t administer epinephrine.

Thomas and Dina were devastated but also inspired to make a difference. "I think about how the moment where his life ended was also the moment that my life, quite literally, changed forever," says Thomas. "For my wife and I, the way this was, was us coming up from our grief deciding that Eli's life would be used to change law, policies, and practices." In short, they don’t want any other families to experience what they went through.

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Dillon Mueller Memorial Fund Helps Save Lives

This story about the death of Dillon Mueller of Wisconsin reminds us of Ruthie T. Cornell, our founder Jon Terry’s sister. She also died from a bee sting and did not know she was allergic. Like George and Angel Mueller, we have worked tirelessly to have legislation enacted. We want everyone from bus drivers to first responders and restaurant workers to have access to non-patient specific epinephrine. And just like Dillon’s parents, we conduct training sessions for anyone who wants to learn what to do in an anaphylaxis emergency and how to use an epinephrine auto-injector (EAI) device. Dillon’s family knows of at least 7 people whose lives were saved because of their efforts.

Dillon Mueller Memorial Fund Helps Save Lives

Dillon Mueller on Dirt Bike

Fund Helps Increase Availability of Epinephrine in Wisconsin

By Kristen Stewart
May 14th, 2020

By the time he turned 18 years old, Dillon Mueller of Mishicot, Wisconsin had already spent years making an impression on his family, friends, and community.

He was an award-winning dirt bike racer since the age of 6, an Eagle Scout, and a member of Future Farmers of America. He was so beloved the crowd chanted "Do It for Dillon" to raise the bids when he volunteered his services at a fundraising auction. He made a difference in quieter ways too. He showed a genuine interest in others and befriended everyone at school from the autistic kids to the quarterback to the teachers. He was also the first in line to help anyone in need. "Even though he was in his barn clothes, if somebody wanted help, he'd be off and running with cow poop still on his shoes," remembers his mother Angel.

The youngest of Angel and her husband George's three sons, Dillon was supposed to be the seventh generation to run their family farm. Instead he is leaving a different kind of legacy — one of donated organs and as the inspiration for the Dillon Mueller Memorial Fund which works tirelessly to provide greater access to epinephrine in Wisconsin and around the country.

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Now What? A Layman’s Appraisal of Covid-19…

We hate to pile on with the doom and gloom, but this article describes the current situation and all the possible after-effects on such things as funding for charitable causes. Since asthma sufferers might be at increased risk if exposed to the virus, we are including links to some excellent webinars for all on practical treatment suggestions to those exposed to COVID-19. Meanwhile we remain hopeful about upcoming legislation at both the federal and state levels to address the specific needs of those living with severe allergies such as requiring training and awareness at restaurants.

As we hear more positive news about medications that work as well as vaccines, we will be sure to pass it on!

Now What? A Layman’s Appraisal of Covid-19…

Allergy Advocacy Association Logo Covid-19 Question Marks

…how it effects Allergy Advocacy and….well, everything else, too

By Jon Terry, founder
April 14th, 2020

Greetings.  At this time of international crisis, I sincerely hope all our readers are healthy and safe.

The coronavirus pandemic has impacted almost everyone around the globe.  So many serious questions remain unanswered. How many lives will be lost? How many more individuals will become infected?  How long will so many people need intensive medical care?  When will the number of people at risk for COVID-19 begin to decline? (Who knows?)

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FARE & Friends Making the Case on Capitol Hill

Two days of attending presentations and advocating with our legislators in Washington, DC gave us a very positive outlook on the future of protecting our love ones who have life-threatening allergies. Read all about the topics discussed and the specific legislation we are advocating for, along with numerous photos of the 150 people of all ages who attended. Next year FARE hopes to fly in five hundred activists and advocates, so Washington will know we will not be ignored!

Members of the New York State FARE contingent at US Capitol building

Edited by Jon Terry
March 11th, 2020

Greetings. On March 3rd and 4th the Food Allergy Research Education (FARE) organization hosted the “Courage at Congress Advocacy Day to Fight Food Allergies.” Your Allergy Advocacy Association proudly participated in conference and lobbying activities.

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