Minnesota mom works to take ‘fear out of food allergies’

Star Tribune (Minneapolis, MN)

July 22--Stadium workers are scrubbing down CHS Field -- power-washing seats and concourses and even vacuuming the grass -- for the St. Paul Saints' annual "No Nuts"game Sunday, allowing fans with life-threatening peanut allergies to attend.

It's just the latest of dozens of victories for Nona Narvaez, Minnesota mom, nonprofit founder and activist.

Through her Anaphylaxis and Food Allergy Association of Minnesota (AFAA), she has spent nearly two decades persuading businesses, lawmakers, schools and even insurers to make the state safer for people with life-threatening allergies.

An estimated 15 million Americans have food allergies, including 200,000 Minnesotans.

Narvaez is the force behind laws requiring ambulances in the state to carry epinephrine and schools to keep lifesaving medications near students with severe food allergies.

She used the threat of a law change to force insurance companies to voluntarily pay for a dietary amino acid formula needed by individuals with severe allergies.

She persuaded the Saints, along with the Minnesota Timberwolves, Twins, Minnesota United and Lynx, that accommodating fans with peanut allergies is the right thing to do. She started an overnight summer camp in Mound for kids with allergies. She gives hundreds of talks each year to parents, teachers and policymakers, and is on advisory boards that influence the Food and Drug Administration and the U.S. Department of Agriculture.

And she does it all for free. Her nonprofit is staffed by volunteers and runs on an annual budget of $50,000.

Narvaez "is a nationally acknowledged expert on many of these issues. She mobilized the community," said Dr. Allan Stillerman with Asthma and Allergy Specialists who is on the AFAA medical advisory board. "She paved the way to get epinephrine in ambulances and schools. I have to believe it's lifesaving."

Stillerman said he often fields calls from others trying to make change in their communities. "They ask, 'How do we achieve this in our community?' I tell them about the likes of Nona and her husband."

Reaction to a kiss

Narvaez was a legislative policy analyst when her oldest son, Max, was born in 1998. Neither she nor her husband, Jeff Schaefer, have food allergies, but they quickly realized that Max was highly allergic to milk, eggs, peanuts, tree nuts, pork, beef, fish, shellfish, sunflower seeds and peas. After drinking coffee with milk, Narvaez kissed her son and he had an allergic reaction, she said.

"Day cares didn't want to accept him because they were too afraid of his condition. Play dates were almost impossible," Narvaez said.

At the time, many parents' concerns about food allergies were dismissed as hysterical and overly protective, she said. When Narvaez found no local support groups, she and Schaefer were forced to make a decision: "Do we start a nonprofit and educate, or do we isolate?"

So she and her husband started AFAA and its medical advisory board to get science and expertise on their side.

"As a parent, you can say everything a doctor would say, but your credibility isn't there unless you have that medical background or the medical advisory board," Narvaez said.

The nonprofit's first priority was to get epinephrine into ambulances and classrooms. At the time, many first responders didn't carry it and schools kept it locked up in nurses' offices.

The young mother, unable to find a babysitter for her two young sons -- both with food allergies -- loaded her stroller and headed to the State Capitol. "Kids are much more adorable than middle-aged lobbyists," she said.

The laws began to change. In 2002, legislators required ambulances to carry epinephrine. In 2004, despite school district opposition, schools were required to make epinephrine accessible to students and to create individual health plans to keep kids with allergies safe. Plans include training staff to recognize serious allergic reactions and administer the medication. They also may include cleaning classrooms and limiting foods in learning areas.

It's not just about legal mandates. Narvaez wants to use AFAA to improve the quality of life and opportunities for people with food allergies. That's why she started working on sports teams and businesses to host peanut-free events and other activities that didn't revolve around food.

She asked Major League Baseball to limit peanuts in some ballpark sections at some games. The Twins now offer peanut-free sections at 12 home games each year, "pav[ing] the way for other national teams to do peanut-free sections," Narvaez said.

AFAA hosted an allergy-free Halloween party at the Mall of America.

Her son Max, now 18 and heading to St. Olaf College next month, said the camps and events his mother fought for helped give him a normal childhood. "Being a part of AFAA has opened up a whole other network of friends for myself," he said.

Narvaez said her next goal is to bring clinical drug trials for food allergies to Minnesota. And she remains focused on public education.

"There are a lot of people who say, 'If you have an allergy, just stay home.' They don't say that to a kid who has a heart condition or asthma or diabetes," Narvaez said.

Every year, 200,000 visits are made to emergency rooms in the United States due to food allergy reactions, according to the Mayo Clinic.

Bruce Kelly, a 22-year-old Ramsey man who was aware he had food allergies, died in 2016 after eating a piece of chocolate that had touched peanuts somewhere during production.

"It's so heartbreaking to us. I take it quite personally. I think, 'Oh my gosh, we haven't got our message out. We haven't educated people,' " Narvaez said.

The Saints host one peanut-free game a year. They turn it into a bit of a spectacle, offering special mascots and skits. One year, a peanut mascot was chased around the stadium before police arrested him.

"We love the relationship. It's one of those things that is quirky and fun," said Saints' Director of Corporate Sales Tyson Jeffers.

Jeffers said they usually get some blowback on social media to the No Nuts game, but use it as an opportunity to educate people who don't understand the severity of food allergies.

Stillerman said Narvaez has brought the right mix of policy work, compassion and science to her advocacy.

"She helped create a correct balance. The goal is to take fear out of food allergies. It doesn't mean ignore it," Stillerman said. "You need to respect the allergies, but you can live a normal lifestyle."

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