Gayle Rigione

CEO and Co-founder of the AllergyForce App

FoodASC Member since 2018

 

Gayle Rigione

 

Please tell us about yourself and why you are interested in food allergies.

Who am I?

I could share fun tidbits about me, like that I’m still madly in love with my husband and lifetime BFF, or that I love to ski and am proud that my three children now outski me.

Ryan and family

I could share that I just earned my scuba diving certification or that seeing the sunrise from Machu Pichu still tops my bucket list.

I could share that I’ve also had a diverse career – from senior executive at MasterCard, to driving business  development  at a digital marketing start-up, to directing MBA admissions for Cornell’s B-school, to co-founding my own start-up.

But what I really want to share is that I’m an allergy mom, with my oldest living with multiple anaphylactic food allergies since he was a baby.

Ryan

Ryan was born in the late 90’s at the beginning of the food allergy surge. Our family muddled through educating schools, friends, caregivers, coaches and family. We experienced the highs and lows of food allergies, from finding an allergy-savvy restaurant, to failing food challenges; from outgrowing the final tree nut allergy, to spending a night in the ER because we made a mistake.

Ryan is now in college.  The good news is that he’s outgrown most allergies — only 5 today vs. 15+ when he was little. The bad news is that he still lives with 5.

So yes, I am deeply interested in food allergies–they’ve impacted our family, taught Ryan caution, resilience and perseverance, and inspired me to build an app that makes food allergic living more spontaneous for our community.

 

Please tell us about your start up.

During a vacation my family headed out to lunch at a local cafe. We dug deep into our allergic son’s backpack for the Italian allergy translation.  We found it, crumpled, almost illegible.  It was our ‘aha’ moment managing food allergies on-the-go, far from home. There just had to be a better way.

And now there is.

 Allergy Force App

Allergy Force  is a food allergy management app that makes life with food allergies easier to navigate. It’s like having a food allergy mom in your pocket so your family can live with less anxiety and more confidence.

The allergy force app has everyday features to use when out-and-about, and potentially life-saving emergency features (we hope you’ll never use).

The app has 14 different features, including:

  • An allergy profile that can handle up to 17 different allergies, including 5 unique to you
  • A food bar code scan and search for grocery shopping
  • A restaurant explanation card you can email or text in 11 languages
  • A step-by-step reaction management guide with your own doctor’s instructions
  • A 911 and emergency contact dialer
  • A log to record all your reaction details for your next allergist visit
  • An epinephrine expiration alert for up to three epinephrine auto-injectors.

Whether you’re buying groceries, vetting a restaurant, handling a reaction, or briefing your allergist on past reactions, Allergy Force keeps essential information you need to stay safe at your fingertips.


Describe a challenging experience you had related to food allergies and lessons learned.

We recently ate at a restaurant with a menu that had promising options for our son. We went through his list of allergies and cross-contact concerns with the server.  No eggs, peanuts, peas, chickpeas, or lentils. No cross contact. Check!  Steak and mashed potatoes were a go.

Then dessert. Typically, dessert is a no-fly zone for us, but the server read the ingredients label and dessert was also a go. It seemed we’d won the lottery that night.

After dinner, I trailed everyone out the door, thanking the server for taking good care of our son.

When I got into carI was greeted with, “I need to get Benadryl, Mom.  My throat is itching. Bad.”

My heart plummeted.

We dashed to a pharmacy, bought Benadryl, gave him a dose.  The drive back to the hotel was interrupted by a “replay” of his dinner.

“I need my Auvi-Q, Mom,” my son said. “I’m really scared. I’m afraid I’m going to die.”

We fished it from his pocket, injected his thigh, googled the nearest ER and raced there.

At the ER, the words “food allergy” were barely spoken when our son was whisked into a room, hooked up to an IV with an epinephrine, prednisone & an antihistamine cocktail. We spent hours observing, fretting, regretting. Around 2 AM he was discharged and we left – drained, relieved, thankful.

We returned to the restaurant the next day to speak with a manager.  He allowed us to read the ice cream label. There was egg in the ice cream, though listed at the bottom of a long list of ingredients.  The server had missed it. It was easy enough to overlook.  Our trust had been misplaced.

Lessons Learned:

  1. We no longer assume a restaurant dessert is safe unless we read ingredients labels.
  2. We should inject epinephrine right away, at the first instance of the itchy throat, and head directly to an ER.  We lost precious time tracking down Benadryl.
  3. Better yet, we should have call 911. The 15-20 minutes we wasted before injecting could have had a tragic outcome.

 

Describe a rewarding experience you had related to food allergies.

 

When my son was in elementary school, he wasn’t invited to many birthday parties. No one ever said anything, but I suspect his widely communicated food allergies were too scary for hosting parents.

However, there was one birthday party he was invited to – it was Halloween-themed. The hosting mom went to great lengths to make the party safe and inclusive for Ryan.  She even made sure the ‘intestines’ the boys would touch with their hands during the ‘Haunted House’ activity was made from egg-free spaghetti.

My son came home over-the-moon happy.

I will never forget the mom’s kindness to my son and to me.

Food allergies can bring out the best in people.  It’s like they give you a hug when they take extra steps to make your child just “one of the bunch”.

What more could we ask?

 

 What motivates you to do what you do?

Ryan and siblings

Two things:

  1. Ryan. Food allergies have shaped his life but they do not define him.  Being food allergic will continue to influence his life as an adult. These facts inspire me to build tech tools to help him live his life safely, to help him make good choices and decisions when they matter most.
  2. A desire to help others navigate allergic living with less fear. We’d like to make the journey through life for people with food allergies easier, less anxiety-ridden, more carefree. Living with food allergies shouldn’t mean we have to opt-out or miss-out on fun.

 

Do you have a go-to resource? If so, what is it and why is it useful?

The right Facebook group can be a circle of love.  I’ve found the following supportive and generally positive communities.

  • FABlogCon
  • Dining Out With Food Allergies
  • Food ASC Inner Circle
  • Friends Helping Friends
  • Parents of High School & College Kids with Food Allergies
  • Positive Parenting with Food Allergies

A word of caution. Some food allergy groups on Facebook can be overly negative, sources of poorly vetted information, and actually stressful.  Pick and choose carefully.

 

What do you wish other people knew about food allergies and what’s one action that can be performed to increase knowledge and awareness in the general population?

My concern is more relevant to parents of older children, particularly those leaving the nest.

Some wines, distilled spirits and beers contain undisclosed allergens, either used as processing agents or as ingredients.

Alcohol is not regulated by the FDA, but by The Alcohol and Tobacco Tax and Trade Bureau of the Treasury (TTB) and clear allergen labeling is not required for alcoholic beverages.

Wine can contain egg albumin, casein (milk protein), chitin (fiber from crustacean shells), fish oil, gelatin (protein from boiling animal parts) and isinglass (gelatin from fish bladder membranes).

Many liqueurs and some craft beers are made with tree nuts though their names and descriptions may indicate the presence of the allergen.

The TTB is currently considering labeling requirement changes that would at least make allergen labeling voluntary with exceptions granted by petition.  The TTB is seeking comments through March 26, 2019, so the allergy community has a small window to weigh in on this important matter.

The last time this was reviewed by the TTB was in 2006, so this is a rare opportunity.

You can learn more about the TTB’s current labeling policy here.   I am hoping you would join with me and comment on the TTB’s food allergy labelling proposal before the deadline.  

 

What advice would you give to someone just embarking upon this journey?

Here are four pieces of advice:

  1. Think about how you can encourage your child to become your “food allergy management partner” over time. Start early.  Be consistent.  Be intentional.
  2. Research and use technology to make allergic living more convenient. There are great apps/websites available such as Allergy EatsAllergy Translation, AssureTech, ipiit, NimaSiitch, Spokin, WeBelay, among others, as well as AllergyForce.  These tools can help you fill in food allergy coverage gaps.
  3. Research existing therapies, like OIT and SLIT. Evaluate if they’d work for your family and pursue them if they’re a fit for your child and your family.
  4. Attend FARE and FAACT sponsored conferences with your pre-teen or teen. For example, taking your child to the annual FAREcon Featuring Teen Summit  can help them find an understanding community of peers facing similar challenges.

 

Is there anything else you’d like us to know?

Life is full of uncertainty, but parenting a child who could die if he eats the wrong thing takes uncertainty to a new level.  I’ve been frightened to use Ryan’s EAI and have second-guessed the need – “do we?” “don’t we?”— when he ate the wrong thing.

My hope is that there will soon be a cure for food allergies, or at least something that will reduce the severity of ANA reactions. Recent research and FDA breakthroughs give me great hope this will happen, if not this year, then within the next few.

Until then, there are great tech solutions to help you navigate your food allergic life with greater ease, the AllergyForce App being just one of them.

Thanks to technology, life with food allergies, as ‘interesting’ as it may be for us, just keeps getting easier!

 

 

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Learn how you can manage food allergies on the go with more confidence and less anxiety.
Was she crazy or inspired?  Why would an Ivy League admissions director leave and launch a start up?  Learn 4 things Gayle Rigione, Founder of Allergy Force APP, wishes she had done when her son with anaphylactic food allergies was younger.  She also talks about where to find the moral support and advice you need most when your loved one has food allergies @FoodASC.#foodallergies #ANA #foodallergyfamily

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