FARE+Well Newsletter – March 2019

www.foodallergy.org #ContainsCourage

MARCH 2019 NEWSLETTER

A publication of FARE, Food Allergy Research & Education

“I want to teach people that cooking is a way to move past food allergies.”

–Catherine Walker, age 14

In This Issue: Leadership Letter

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CONTAINS: COURAGE™ Campaign Corner

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The Power of Positive Cooking

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FARE Patient Registry’s Mental Health Services Survey: A Q&A With Linda Herbert, PhD

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Volunteers Wanted!

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A publication of FARE, Food Allergy Research & Education

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foodallergy.org

LEADERSHIP LETTER

Dear Friends of FARE,

CONTAINS: COURAGE™

CAMPAIGN CORNER Lisa Gable Chief Executive Officer

March is National Nutrition Month, an opportunity to promote healthy eating habits and celebrate nutrition educators. The counsel of nutritionists and dietitians is vital for food allergy patients and families, especially in the challenging months that follow a diagnosis. We were pleased to offer continuing education sessions for registered dietitians at last year’s FARECon featuring Teen Summit, and we thank these allies for their work on behalf of our community.

Nutrition is central to this month’s feature on 14-year-old Catherine Walker, a seasoned cook, recent cookbook author and FARECon 2018 presenter. Catherine shares how learning to cook fresh foods that are free of your allergens can be empowering and delicious. As we wait for spring’s arrival, readers can take piping hot comfort in her allergyfriendly recipe for creamy potato fennel soup.

We know that diet and nutrition can affect the gut microbiome, the microorganisms that live in our digestive tracts. Research published in January by Cathryn Nagler, PhD, and others has now revealed fascinating connections between the microbiome and food allergy.

Gut microbes transplanted from healthy human babies were found to protect milk-sensitized mice against reactions to milk, but microbes from milk-allergic babies did not protect the mice against milk anaphylaxis. A single bacterial species found in the healthy babies also served to protect the mice against milk allergy symptoms, suggesting that microbes might someday be used to treat or prevent food allergy.

Looking for ways to get involved? We’ve introduced an online pathway on foodallergy.org where you can explore volunteer opportunities, and in next month’s newsletter we’ll debut a Collaborators program to share FARE’s message with engaged partners. A new survey on the FARE Patient Registry (foodallergypatientregistry.org) will help mental health and social work professionals devise new strategies to meet the needs of our community. Plus, learn how you can join the Contains: Courage™ Campaign transforming food allergy care, research, education and awareness. Thank you for uniting with us in these efforts.

Warmest regards,

Lisa Gable

We are grateful to families across America for sharing their powerful stories showcased in the Contains: Courage™ Campaign. If you haven’t already, please submit your kid’s “ingredients” of courage. Learn more about how to craft your story at foodallergy.org/containscourage.

FARE is partnering with sports teams in cities nationwide to offer inclusive fun at Contains: Courage™ Nights. When you purchase a Contains: Courage™ Night ticket to any of the National Basketball Association or American Hockey League games below, you will enjoy discounted game tickets, special pregame activities and giveaways.* FARE receives a portion of each ticket sold.

Menu ingredient information will be available at select concession stands, and at least one concession stand per game will be nut-free. Everyone is welcome, so please spread the word!

New games are being added. Check foodallergy.org/containscourage for updates.

NBA Games: March 9 - New York Knicks (vs. Sacramento Kings) March 23 - Washington Wizards (vs. Miami Heat) March 30 - L.A. Clippers (vs. Cleveland Cavaliers) March 30 - Phoenix Suns (vs. Memphis Grizzlies) AHL Games: March 29 - San Diego Gulls (vs. Bakersfield Condors) *Included benefits differ between games, please read each ticketing page carefully for details

THE POWER OF

POSITIVE COOKING When Catherine Walker set out to write a cookbook, she made healthy eating the focus. For Catherine, age 14, and her 12-year-old brother Chase, a key part of eating healthy is eating foods free of their allergens: milk, egg, peanut, tree nuts and, in Catherine’s case, quinoa. Aspiring chefs won’t find those ingredients in “Cook It Up! – Delicious Recipes for Healthy Cooking,” but they will find bold flavors and a bounty of harvest-fresh produce.

Most of Catherine’s allergies were diagnosed when she was a baby, after she reacted with full-body hives to her first flu vaccine, which contained egg. “I’ve been cooking at home my whole life, because we can’t eat at restaurants,” she explains. “I’ve always been adventurous about trying new foods. Cooking at home, it’s easier to experiment.”

For nutrition and zest, the freshman at Western Reserve Academy uses fruits and vegetables grown near her hometown of Hudson, Ohio.

Catherine remembers, “Around sixth grade, I became really interested in making my own recipes. Eventually I had so many that I decided I should put them in a book.”

She photographed the 70 dishes herself and designed the book’s logo. A family friend helped with the layout, and Catherine self-published “Cook It Up!” (www.cook-it-up.com) in May 2018. In addition to being milk-, egg-, and nut-free,

many of her recipes are naturally gluten-free or vegan.

Other recipes contain allergens that Catherine and Chase can eat.

Catherine connected with FARE through a local support group, NEOFAN (Northeast Ohio Food Allergy Network), and signed on as a presenter at last November’s FARECon featuring Teen Summit, where she spoke about living with allergies, learning to cook, and publishing her book.

“It was a really, really great experience to meet a bunch of people that have the same allergies that I do, and be in this environment where everybody understands about allergies,” she recalls. “My session was mostly kids, but there were a few parents, too, and I was also able to meet Chef Joel Schaefer. He’s great in terms of food allergies!”

Catherine sees cooking as a food allergy management skill that’s helpful at any age. “I want to teach people that cooking is a way to move past food allergies. Being able to cook, you can make delicious, nutritious meals at home, and they will always be safe for your allergies. And they’ll be homemade, which is always the best type of food.”

Kudos to Catherine! Harnessing her passion to inspire the food lifestyle of her community exemplifies the spirit of FARE’s Contains: Courage™ campaign.

Catherine Walker’s Creamy Potato Fennel Soup • • • •

1 lb Yukon gold potatoes, quartered ½ fennel bulb, roughly chopped 2 yellow onions, roughly chopped 1 garlic clove, roughly chopped, OR ½ tsp garlic powder

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4 cups chicken stock Olive oil as needed Salt and pepper Chives, crumbled bacon and optional croutons for garnish

Sauté fennel, onions and garlic in olive oil until soft. Meanwhile chop the potatoes (skins on) and boil them separately in a large pot until cooked through and skins fall off. Remove from heat and drain. Remove skins. Put onion mixture into the pot with the potatoes.

Photo credit: Catherine Walker (www.cook-it-up.com)

FARE+Well Newsletter March 2019

Add chicken stock and bring to a boil. Turn off heat and blend soup with a hand-held blender until smooth. Add salt and pepper to taste. Serve hot. Drizzle a little olive oil on individual soup bowls. Garnish with chives, bacon, and croutons.

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FARE PATIENT REGISTRY’S MENTAL HEALTH SERVICES SURVEY:

A Q&A WITH LINDA HERBERT, PHD Earlier this year, the FARE Patient Registry (foodallergypatientregistry.org) posted a new Mental Health Services survey. FARE interviewed survey author Linda Herbert, PhD, who is Director of the Psychosocial Services Program for the Division of Allergy and Immunology at Children’s National Health System in Washington, D.C. What do we know about the psychosocial impacts of food allergy?

Patients and caregivers report a range of psychosocial concerns: stress related to the amount of time it takes to manage food allergies; anxiety/worry about potential allergen exposures, allergic reactions, and medical procedures; decreased quality of life due to the impact of food allergy on social activities; and teasing/bullying about food allergy from peers.

“This survey will inform our next steps in ensuring that families have the support they need. If we understand the breadth of mental health needs and barriers to access, we can begin to brainstorm and implement solutions.”

Medical procedures to treat severe reactions to food are up 377 percent in the past decade. Are support resources for patients and caregivers keeping up with demand?

As more children and adults are diagnosed and new treatments come to market, there will be a growing need to support patients in daily food allergy management. At this time, there are very few mental health professionals who specialize in this area. The allergy and psychology communities will need to work together to educate and train mental health professionals about the unique needs of food allergy patients and their caregivers.

What questions are you hoping to answer?

With this survey, we hope to learn how many food allergy patients and caregivers seek mental health support for food allergy and the types of psychosocial concerns for which they want help. We also want to learn about what FARE+Well Newsletter March 2019

patients and caregivers have experienced when they try to identify a mental health provider. We want to know if they have success finding someone with food allergy experience and if there are any barriers to getting the help they want.

How will completing the survey help food allergy patients or their caregivers?

By completing this survey, food allergy patients and caregivers will directly inform the allergy and psychology communities about their mental health needs and barriers to accessing support. We want all patients with food allergy and their caregivers to be able to access mental health support if needed, so the results of this survey will inform our next steps in ensuring that families have the support they need. If we understand the breadth of mental health needs and barriers to access, we can begin to brainstorm and implement solutions.

You can help researchers assess the psychosocial impact of food allergy and develop strategies to support patients and their families. To take the survey and help drive research forward, visit foodallergypatientregistry.org, where you can join the world’s largest food allergy patient registry or log in to your existing FARE Patient Registry profile.

VOLUNTEERS WANTED! Want to raise food allergy awareness in your community? Visit FARE’s online volunteer pathway (foodallergy.org/volunteer) to find links that can help you make an impact. Click on the optional interest form that helps the FARE team follow up and support your volunteer efforts. You can also access fundraising programs and opportunities for workplace volunteering, training and awareness.

The volunteer pathway also links to our Volunteer Ideas and Opportunities webpage, which highlights activities that can fit every schedule. Options range from quick and easy projects, like sharing informational fliers with local restaurants or food banks, to more involved endeavors, like organizing an advocacy day at your state capitol or a community education event. Find your ideal way to make a difference today!

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