FARE+Well Newsletter - January 2019

www.foodallergy.org #ContainsCourage

JANUARY 2019 NEWSLETTER

A publication of FARE, Food Allergy Research & Education

“For us it’s been about learning to live with food allergies together, and being supportive to each other.”

– Malaina Kapoor, age 16,

reflecting on how she and her brother Zidaan, age 11, manage his food allergies as a team.

In This Issue: Leadership Letter

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An Update on FARE’s Research Initiatives

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A Winning Team, Working Together

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Recipe: Thai Pumpkin with Basil

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URA O C : S N I CONTA

A publication of FARE, Food Allergy Research & Education

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foodallergy.org

An Update On

LEADERSHIP LETTER

Dear Friends of FARE,

Lisa Gable Chief Executive Officer

We hope that your winter holidays have been safe and your New Year is off to a good start. FARE has hit the ground running in 2019, following last month’s launch of our five-year Contains: Courage™ Campaign to raise food allergy awareness across every state and to improve patient care and research in a transformative way.

The Contains: Courage™ Campaign reflects and amplifies the stories of young people managing food allergies. In this newsletter, I’m pleased to share with you the voices of Zidaan and Malaina Kapoor, two remarkable young people I met last November at FARECon featuring Teen Summit, where they placed first in the Innovation Tank competition to develop an invention that makes life better for food allergy patients and families. FARE celebrates their creative partnership, their commitment to the cause and their close bond as brother and sister.

We are humbled by the generosity of each and every individual and organization that is helping to accelerate solutions for millions of Americans with food allergies. During an extraordinary evening last month in New York at our 21st Annual Food Allergy Ball, we raised more than $2.1 million in support of FARE’s mission. It was a memorable night, highlighted by FARE Board Chair David Bunning’s pledge of an additional $5 million in matching funds to the Contains: Courage™ Campaign on behalf of the Bunning family. We are proud to have raised $45 million toward the $200 million goal!

At the gala we also paid tribute to James R. Baker, Jr., who received the Changemaker Award and has retired as Chief Medical Officer of FARE; honored Kimberly Yates Grosso for her advocacy on behalf of families seeking therapy for food allergy; and presented the Lifetime Achievement Award to Chef Alex Guarnaschelli.

The New Year brings opportunity for new resolutions. All of us at FARE are steadfastly resolved to make life safer for all those affected by lifethreatening food allergies. Thank you for your support.

Warmest regards,

Lisa Gable

FARE’s Research Initiatives The Contains: Courage™ Campaign seeks to raise historic levels of funding in the next five years to transform food allergy awareness, education, advocacy, alliances and research.

Our campaign’s research goals are to: • understand the scope, causes and progression of the disease • identify and promote best practices to improve the quality and availability of patient care • develop effective and patient-friendly therapies, diagnostic tests, and approaches to prevention • foster the invention of new ways to treat food allergies Continued on page 4

A WINNING TEAM,

WORKING TOGETHER Eleven-year-old Zidaan Kapoor doesn’t remember being diagnosed with food allergies as a toddler, but his 16-year-old sister Malaina recalls “sitting on the floor of the pantry with my parents and throwing out boxes and baskets of food into these huge trash bags.” Malaina doesn’t have food allergies, but when Zidaan stopped eating peanut, tree nuts, eggs and eventually seafood, she did, too. “We’re brother and sister,” she explains, “So for us it’s been about learning to live with food allergies together, and being supportive to each other.”

This teamwork brought Zidaan and Malaina to Washington, D.C., to compete in FARE’s third annual Innovation Tank at FARECon featuring Teen Summit. They took top prize in the prototype contest, designing a device that makes it easier to carry epinephrine wherever you go. Zidaan’s increasing independence inspired them to invent a comfortable way to carry an EpiPen® without resorting to bulky, easy-to-lose backpacks or fanny packs. “We were brainstorming how we could solve this problem in our family,” Malaina notes.

“Then we put more effort into it once we heard about the competition.” They’re now taking steps to commercialize their product, which secures an EpiPen at Zidaan’s back, inside his waistband and hidden by his clothes.

Zidaan and Malaina’s Innovation Tank pitch wasn’t the family’s first creative work for the food allergy community.

Last year, Zidaan wrote a guest post for the FARE Blog expressing his concerns about a scene from the film Peter Rabbit, in which a human character with food allergies is attacked with his allergen, has a severe reaction and needs to use an epinephrine auto-injector. “I wanted to use the blog post as a warning and also to share my opinion,” says Zidaan.

“The blackberry scene was incorporated into a lot of other scenes that were intended to be funny, and obviously food allergies are not something to be laughed at.”

FARE+Well Newsletter Jan. 2019

Wanting to do more, Zidaan harnessed his interest in photography to support FARE. He created the website Revel In Light (www.revelinlight.com), where he sells photos that capture the beauty of the San Francisco Bay Area. FARE receives all profits from the site. To date, Zidaan’s photos have raised $1,600 for food allergy research, education, advocacy and awareness. He’s also shown his work at three local galleries.

Zidaan and Malaina’s home-schooling curriculum includes projects like their winning prototype and artistic interests like photography, violin and opera. Cooking classes are also in the mix. Both report that Zidaan’s food allergies improve the family’s diet. “Having to read labels makes you much more aware of what’s in your food,” notes Malaina. “It’s opened up a gateway of recipes and many different cuisines that we’ve tried, so it’s also been a benefit,” adds Zidaan. In this newsletter, they share a favorite dish that’s free of top allergens and packed with nutrients.

The siblings’ Innovation Tank success reflects the cooperative way they manage food allergy as a family. “My sister and I have a very good relationship,” explains Zidaan. “We play together, we take classes together, we even cook together, so that played a big role.” “I think it made us pretty natural team members,” agrees Malaina, “And it made it much more gratifying when we won together.”

Managing Zidaan’s food allergies has helped shape a healthy diet for the whole Kapoor family.

From left, Vishal, Malaina, Zidaan and Shaila Kapoor.

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RECIPE: THAI PUMPKIN WITH BASIL From Zidaan and Malaina Kapoor Sweet, spicy and bursting with bright flavors, here’s a recipe that Zidaan and Malaina first learned in a class on allergy-friendly Thai cooking taught by Ms. Jirayu Poeter.

Ingredients 2 cups pumpkin, peeled, seeded and cut into small cubes

1 cup water

2 big handfuls fresh Thai basil leaves

4-6 tbsp liquid amino acid soy sauce alternative, such as coconut aminos*

1 Fresno pepper or spur chili, sliced in small pieces

2 tbsp palm sugar

6-8 cloves garlic, finely chopped

2 tbsp cooking oil

Method 1. Add cooking oil to a pan on medium-low heat.

2. Add garlic and stir until lightly browned.

3. Add pumpkin, then water, soy sauce and palm sugar. Stir occasionally.

4. After about five minutes, use a fork to test the pumpkin. If the fork goes through easily, the pumpkin is cooked.

5. Add basil and pepper or chili.

6. Mix well until the basil leaves and chilies are softened. Turn off the heat.

7. Serve with rice.

Recipe Notes • The recipe calls for kabocha (Japanese) pumpkin, but you can substitute other varieties of winter squash, such as butternut squash.

• Compared to the sweet basil used in Italian cooking, Thai basil has a spicy licorice flavor.

• Retain the pepper or chili seeds for more heat, or remove the seeds for a milder dish.

• Brown sugar can substitute if palm sugar is not available. *Coconut is a tree nut under the Food Allergen Labeling and Consumer Protection Act.

An Update on FARE’S Research Initiatives Continued from page 2

Joining FARE as medical advisors in support of the Contains: Courage™ Campaign are four luminaries in food allergy science and patient care.

• Policy, Education and Public Health – Dr. Ruchi Gupta (Northwestern University, Ann & Robert H. Lurie Children’s Hospital of Chicago) • Innovation – Dr. Kari Nadeau (Sean N. Parker Center for Allergy and Asthma Research, Stanford University) • Research – Dr. Wayne Shreffler (Harvard University, Massachusetts General Hospital) FARE+Well Newsletter Jan. 2019

• Patient Experience – Dr. Brian Vickery (Emory University, Children’s Healthcare of Atlanta) Also in December, the FARE Patient Registry debuted a new survey. To shed light on the psychological burden of food allergy and create a directory of mental health care providers with food allergy experience, the survey assesses interest in and access to mental health support services for food allergy patients and caregivers. To take the Mental Health Services Survey, join the FARE Patient Registry at foodallergypatientregistry.org. Or if you’re already enrolled in the registry, log in to your profile to take the new survey, record any recent reactions, explore registry data, and more.

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