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Four Moms Show Power of Getting Involved in Food Allergy Research

 

In 2015, long-time friends and Kids With Food Allergies members Eleanor (Ellie) Chu and Dr. Karen Nanji met Lesley Solomon and Dr. Christine Olsen. Since teaming up, these women have proved that determined family members can play a huge role in food allergy research.

They've raised $10 million and enlisted top researchers to launch the Food Allergy Science Initiative (FASI). Through FASI, researchers will work to answer key questions about the science of food allergy. The goal is to enable the development of better testing and treatments.

To learn more about FASI, Kids With Food Allergies (KFA) spoke with Ellie and Karen. KFA also spoke with the pediatric allergist on the team: Wayne G. Shreffler, MD, PhD. Dr. Shreffler is the director of the Food Allergy Center at Massachusetts General Hospital and the chief of pediatric allergy/immunology.

KFA helped with the initial learning curve

When the women first met, conversation quickly turned to food allergies and the current state of food allergy research. That’s no surprise, given that they all have young children with food allergies.

In fact, they each spent a lot of time learning about food allergies after their children were first diagnosed. Ellie has also had tree nut allergies herself since birth. But, as she put it, “when it’s your child it’s a whole different ballgame!”

Karen and Ellie joined KFA. They used KFA's website, community forums, blogs and webinars.

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Ellie Chu, Karen Nanji, Christine Olsen and Lesley Solomon
Photo courtesy of Jesse Costa/WBUR

“KFA’s forums were a life/sanity saver for me when my son was diagnosed!” says Ellie. “I’ve used them often since then to learn more.”

“Overnight we had to learn about reading labels, hidden ingredients and so much more,” Karen points out. “KFA was extremely helpful during that quick learning process!”

Many unanswered questions remained

After learning how to keep their children safe, each of the four women did more research. As a result, they each concluded that the science guiding food allergy diagnosis and treatment is weak.

“The diagnostic options are not good,” Karen says. “You can get conflicting results. And the tests do not accurately predict how severe the allergy is. Because this is a life-threatening condition, we all found the lack of knowledge unacceptable.”

As the women compared notes, ideas came together about how to advance food allergy research. What would it take to fill in the knowledge gaps?

Starting with a symposium

The group decided to host a scientific symposium. They scheduled the event for December 2015. They invited key scientists who study food allergies, immunology, gastroenterology and more. “We also wanted to include people from related fields,” explains Ellie. “We hoped to bring new thinking to this topic.”

In their planning, the group quickly got some of the key players on board. These people helped by reaching out to their contacts. “It required a lot of targeted outreach and persistence,” Karen notes, “but interest grew.”

In fact, there was much more interest in the symposium than they had imagined. Once everyone was in a room together, the ideas started flowing. The scientists got excited about moving things forward to find the answers to basic questions about food allergies.

The symposium also caught the attention of the Broad Institute of MIT and Harvard. The Broad Institute conducts collaborative research into complex medical problems. Broad scientists pursue a wide variety of projects that cut across scientific disciplines and institutions.

Forming the Food Allergy Science Initiative

After the symposium, Broad became interested in hosting this research effort.

With major institutions and well-regarded researchers leading the effort, FASI was formed. The group quickly raised $10 million through fundraising. This seed funding enabled researchers to come together under the FASI umbrella.

“We had been considering doing it ourselves,” says Ellie. “But we were lucky that a number of scientists from Broad were at the symposium. These people became interested, and Broad itself became interested. So now they are going to house it there.”

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“We were thrilled when Broad became involved,” adds Karen. “They have made massive strides in other complex diseases. Their interest in food allergies gives us so much hope. There are brilliant scientists who are willing and excited to take on this challenge.”

One of the researchers they asked is Dr. Shreffler, who hopes other allergists will get involved. By partnering with the Broad, the research encourages collaboration that might not be possible if it took place within a single hospital.

He described the mission as focused on basic science to answer the unmet needs affecting people with food allergies.

“Why are some people really more sensitive (to food allergens) and how can we effectively replace the oral food challenge?” he cites as some examples.

Studies involving patients or clinical trials are a long way off, he said.

“We congratulate Ellie, Karen, Lesley and Christine for their important work to create the Food Allergy Science Initiative,” said Cary Sennett, MD, PhD, President and CEO of the Asthma and Allergy Foundation of America. “We need families interested and willing to help us unravel the mystery of food allergies. Researchers need to learn from patients about how food allergies affect their daily lives, and use that information to guide us towards better treatments and a cure.”

Over the next five years, FASI researchers will focus on answering five key questions:

  1. How do cells in the gut sense food allergens, and how do these cells communicate with the immune system?
  2. How does the body determine whether or not a substance is an allergen?
  3. What exactly happens at the cellular level when the body is exposed to an allergen?
  4. What role does gut bacteria play in food allergies?
  5. What is the best way to test these theories in order to create more accurate diagnosis and treatment options for food allergies?

While research will start immediately, initial funding only allows the work to start. FASI has the potential to shape the science behind the diagnosis and treatment of food allergies. Visit FASI to learn more.

Join our community to follow our blog for the latest news on research and treatments. Our community also provides an opportunity to connect with others who manage these conditions for peer support.

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um Ahmad posted:

So glad to be joining this group!!

my 6 and 2 year old boys have allergies for dairy, eggs and tree nuts ����

Welcome!  

My 6-year-old is allergic to eggs and tree nut too.  I have found a lot of great tips and recipes on this website. 

Oh, wow! I am so excited about this! Can't wait to hear more ... and maybe in five years, we'll be so much further down the road than we are now. 

Thank you, ladies, for the hard work you've put into this!

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