Imagine if all the warning you had from your child about an anaphylactic reaction gathering steam was that her “tongue feels heavy” or “it feels like there are bugs in there”? Could you read the smoke signals? Would you shrug it off? Or would you grab for the epinephrine and give your child the shot? What if this was your child’s first reaction? Would you figure it out in time?
Millions of people around the globe live each day, held hostage by the fear of having anaphylactic reaction…just from eating the tiniest morsel of a food their body mistakenly identifies as an invader.
Allergy Force caught up with Elise Bates, President and Co-founder of End Allergies Together (EAT) , a non-profit organization that relentlessly fundraised to invest in fundamental research for food allergy answers and solutions from 2015 to 2020.
“Every great dream begins with a dreamer…” —Harriet Tubman
Elise and her co-founders, Greg Bates and Tom & Kim Hall, launched EAT in May 2015 to accelerate highly promising treatments and cures for the global food allergy epidemic that affects an estimated 220-250 million people worldwide.
There are many unknowns driving this epidemic begging for answers:
- From the underlying factors causing the onset of food allergies – why some people and not others? Why some at birth? Why others as adults?
- To consistently and accurately diagnosing the condition,
- To fully understanding why a body goes into anaphylaxis.
“We can’t cure something we don’t fundamentally understand. Major investments in basic science are critical,” explained Elise. “If you think about Epilepsy, the disease affects about a 10th of the number of people who have food allergies, yet there are 5 classes of treatment options.” Eventually, there could be an entire portfolio of treatment options for food allergy.
Investments in fundamental research, such as those made by EAT and other fundraising organizations like FARE, will be instrumental in eventually improving quality of life for those living day-in and day-out with the anxiety, fear, frustration and isolation imposed by food allergies.
Why EAT?
While a college student, Elise’s husband and co-founder, Greg Bates, was deeply touched by the sudden and tragic loss of his college roommate’s brother from an allergic reaction. Years later, the Bates family experienced anaphylaxis firsthand when their daughter, severely food allergic to multiple allergens from birth, had an anaphylactic reaction at age 10. The fear of losing something as precious as your child is a powerful motivator, inspiring selfless acts of giving and love.
Wanting answers and finding none, Elise and her husband, both Harvard B-school grads, were inspired to chip away at the problem in case study mode. They analyzed the food allergy industry — who were the players? What was the level of existing investment? Where were investments channeled? Where was it all headed? While their analysis identified significant investments in educating and building awareness around the problem, it also highlighted that investment in fundamental research came up short. They felt this imbalance needed to be fixed.
Elise looked to other successful nonprofit models for inspiration. Elise and her co-founders created an organization that they’d want to invest in themselves: low overhead, 90% of funds to research, objective investment decision-making and a brand that was friendly and relatable, a brand anyone could adopt, partner with.
“As a community, we have to work together to get things done—it’s about keeping eyes on the prize”
EAT put together a team of high-powered women who “have been there, done that” on the career front and who wanted to work part-time in an impactful way. Everyone at EAT was touched by food allergies in some way. It was a food allergy family. “We were all juggling,” confessed Elise, but “EAT got more hours out of this model than we would have out of part- timers who weren’t believers.” The EAT team was obsessed by the goal and kept eyes on the prize…answers and solutions.
EAT road tested different fundraising approaches, from organizing large-scale gala events, to attracting individual donors seeking impact investment opportunities, to more grassroots approaches like sponsoring fun runs, basketball shootouts and group work outs (aka “sweat sessions”) at the local level. The EAT team found that localized events delivered an attractive ROI. For example, EAT sponsored 5K Family Run/Walk events, ‘Shoot for a Cure’ basketball tournaments and family fun days, and ‘Sweat to EAT’ events in partnership with Orangetheory Fitness. The beauty of these grassroots initiatives was that they were cost effective to organize and were locally accessible/relevant to families eager for answers.
“The best way to predict your future is to create it.” —Abraham Lincoln
“Our niche was trying to get the research and investment community together to solve a specific problem,” explained Elise. “…but there were many hurdles to overcome and many interdependencies – competing investment options, research prioritization, pharma engagement, the regulatory process.”
In the early days, Elise recalled that EAT “put the money out there and received a lot of research plan submissions.” EAT began to allocate investments in a more targeted and strategic way with the help of advisory boards. EAT’s advisory board structure was architected to ensure the investment allocation process remained objective. The organization had a medical advisory board comprised of subject matter experts who were not conducting research themselves, and a scientific advisory board who advised on the science. Elise added, it was like “a separation of Church and State. Those making investment decisions for EAT were not in a position to benefit from those decisions.”
In its first year, EAT raised $500 K and funded 3 studies. Over the years EAT funded many more. In spring 2019, EAT launched the $1 Million Anaphylaxis Grand Challenge to detect, treat or prevent anaphylaxis because a fundamental understanding of the anaphylactic response was still lacking.
“Anaphylaxis is keeping us all hostage with fear of a life-ending reaction that can happen any time, any place,” she reflected. “If we can mediate the anaphylactic response, that would be a game changer.” Through this challenge EAT wanted to bring expertise together from other disease states — neuroimmunology, oncology — to solve the anaphylaxis conundrum.
“The best times begin at the end of your comfort zone” —Unknown
Living with food allergies is like driving an icy mountain road at nightfall during a snowstorm — with each bend in the road you’re thankful you’re still on the road, still intact. With increased investment in fundamental research, differentiated lines of scientific and promising therapies clearing significant regulatory hurdles — there is hope that ‘driving conditions’ for the food allergic will improve. Dramatically. Soon.
The task of ‘feeding the research beast’ is daunting. It takes millions of dollars. Most of us are not able to write the big donation check, but there are things you can do to help find better treatments and cures. You can bring your expertise, your passion, what you like to do, your energy, your joy and volunteer. After making significant contributions to the advancement of food allergy research and awareness, EAT wound down operations in 2020.
If you want to make a positive difference, FARE and The Food Allergy Fund are great food allergy-focused organizations that are always in need of helping hands to fulfill their missions.
What better way take control of your food allergy-related fears and anxieties than by being part of the solution through volunteering?
The Allergy Force Changemaker Series shines a light on movers and shakers in the food allergy community who drive change and bring positivity to the space for the benefit of the entire community. |
|
Image Credit: Thank you to Pexels for use of the image