N E W SFood AllergyPresident Signs “Stock” Epinephrine Bill!

FALL 2013 • VOLUME 23 • ISSUE 3

New law encourages states to require stock epinephrine in schools

In a historic achievement for the food allergy community, President Barack Obama signed the School Access to

Emergency Epinephrine Act (H.R. 2094), important legislation championed by FARE that will help protect students with food allergies. John Lehr, CEO of FARE, and Rob Nichols and Amie Rappoport McKenna, members of FARE’s Board of Directors, had the honor of attending the bill signing ceremony held Nov. 13 at the White House.

During the ceremony, President Obama revealed a personal connection to our cause.

“I just want to thank all of the outstanding legislators who are here and advocates. This is something that will save children’s lives,” he said. “Some people may know that Malia

[my daughter] actually has a peanut allergy. She doesn’t have asthma, but obviously making sure that EpiPens are available in case of emergency in schools is something that every parent can understand.”

For more than two years, FARE has been working tirelessly toward the passage of this critical legislation. Together with parent advocates, we visited Capitol Hill to secure support. And you answered the call to become advocates – you wrote letters, you called your elected representatives to make your voice heard. These efforts helped assure passage in the House earlier this summer and generated 37 cosponsors in the Senate in less than two months.

FARE would like to publicly thank original co-sponsors Sen. Dick Durbin (D-IL), Sen. Mark Kirk (R-IL), Rep. Phil Roe (R-TN) and House Democratic Whip Steny Hoyer (MD) for their leadership and steadfast support of this legislation, which encourages states to adopt laws requiring schools to have on hand “stock” epinephrine auto-injectors.

More than half of states have laws or guidelines in place allowing schools to stock undesignated epinephrine auto-injectors.

INSID

E 03 ECONOMIC IMPACT OF FOOD ALLERGY New study shows childhood food allergies cost billions annually

04 RESEARCH UPDATE Studies look at reactions, anaphylaxis, asthma

06 NEW CDC GUIDELINES Voluntary guidelines help schools address food allergy management

08 EMOTIONAL HEALTH Tips for parents of children with food allergies

White House photo/Pete Souza

A Vision and Plan for Food Allergy Research

This month, FARE launched a comprehensive strategic plan for food allergy research via a White

Paper, titled “A Vision and Plan for Food Allergy Research.” FARE’s White Paper sets forth its strategy for building a deep scientific understanding of the disease and accelerating the development of safe, practical therapies that would shield individuals with food allergies from life-threatening reactions.

In April 2013, FARE, the world’s largest private source of funding for food allergy research, brought together more than 50 leading researchers, senior government officials, industry representatives and food allergy advocates at a Research Retreat in Washington, DC. FARE’s research strategy, which is based on their discussions, sets forth a three-pillar approach that will catalyze the field:

Develop a strategy and infrastructure to test clinical hypotheses in humans and rapidly advance clinical research.FARE will create a national coordinating center for research, known as the FARE Research Organization (FARO), which will develop standardized clinical trial

CONTINUES ON PAGE 12 > CONTINUES ON PAGE 12 >

What a tremendous year! We have experienced many highlights in 2013, including the incredible moment on Nov. 13 when

President Obama signed the School Access to Emergency Epinephrine Act into law. FARE has been working tirelessly toward passage of this legislation, and the White House bill signing ceremony was the culmination of the hard work of many, many people. I would like to extend my deepest appreciation to the individuals, families, advocates and Congressional supporters across the country who helped pass this law.

As the President himself said, this is about saving lives.

Just last month, we celebrated FARE’s fi rst anniversary. By bringing together the nation’s leading food allergy organizations into one strong leader and advocate for the food allergy community, we have accomplished so much to make life better for all those with food allergies. Some highlights include:

• Unveiling an ambitious “Vision and Plan for Food Allergy Research,” our strategic plan for food allergy research (read more on the cover).

• Successfully advocating for the passage of the School Access to Emergency Epinephrine Act.

• Working with the Centers for Disease Control and Prevention to craft and distribute their “Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs,” the fi rst national comprehensive guidelines for school food allergy management.

• Running a record-breaking FARE Walk for Food Allergy program, which raised $3.5 million in 2013 for food allergy education, advocacy, research and awareness programs.

• Teaming up with the National Restaurant Association to launch a world-class online training program to help restaurant staff become more food-allergy-aware.

• Partnering with the Discovery Channel for the documentary, “An Emerging Epidemic: Food Allergies in America,” narrated by Steve Carell.

• Developing 50,000 new patient packets for physicians to distribute to those newly diagnosed with food allergies.

Your support has made possible these accomplishments and so many more, but there is still much work to be done. Our community is deeply committed to a common cause, and we are grateful for the many dedicated people who have given generously throughout the year and volunteered countless hours.

I look forward to working with you in this coming year and beyond to continue fulfi lling FARE’s mission, and I hope you will continue to join us on this important journey.

John L. LehrCEOFood Allergy Research & Education

Food Allergy Food Allergy Research & Education, PublisherNancy Gregory, Managing Editor Hugh A. Sampson, M.D., Medical Editor

John L. Lehr, CEOIrvin André Alexander, Chief Financial Offi cerGeorge Dahlman, Vice President of AdvocacyVeronica LaFemina, Vice President of CommunicationsMary Jane Marchisotto, Senior V.P. of Research & OperationsJulianne M. Puzzo, Senior V.P. and Chief Development

Offi cer Mike Spigler, Vice President of Education

Medical Advisory Board Hugh A. Sampson, MD, Chairman, New York, NYSeema Aceves, MD, San Diego, CAS. Allan Bock, MD, Denver, COCarla Davis, MD, Houston, TX Glenn T. Furuta, MD, Denver, CO Stacie M. Jones, MD, Little Rock, ARTodd A. Mahr, MD, La Crosse, WIWayne G. Shreffl er, MD, PhD, Boston, MAScott H. Sicherer, MD, New York, NYF. Estelle Simons, MD, Winnipeg, CanadaSteve Taylor, PhD, Lincoln, NERobert A. Wood, MD, Baltimore, MD Robert S. Zeiger, MD, PhD, San Diego, CA

Research Advisory Board A. Wesley Burks, MD, Chairman, Chapel Hill, NCDaniel C. Adelman, MD, San Carlos, CA James R. Baker, Jr., MD, Ann Arbor, MIKari C. Nadeau, MD, PhD, Stanford, CA Robert P. Schleimer, PhD, Chicago, IL Lynda Schneider, MD, Boston, MA

©2013. Th e material in Food Allergy News is not intended to take the place of your doctor. Food Allergy News or Food Allergy Research & Education will not be held responsible for any action taken by readers as a result of their interpretation of an article from this newsletter. If you have any questions or concerns, ask your physician. Never change your child’s diet without the advice or help of a physician and registered dietitian.

Food Allergy News is electronically published quarterly by FARE. Our offi ce is open Monday-Th ursday, 9 a.m. to 5 p.m. and Friday, 9 a.m. to 4:30 p.m. ET. If you have any questions, please call 703-691-3179. To join FARE, please call our offi ce or visit www.foodallergy.org.

All rights reserved. Th is material may not be duplicated without the expressed written permission of the publisher.

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Message from the CEO

7925 Jones Branch Drive, Suite 1100 | McLean, VA 22102800-929-4040 | www.foodallergy.org

Childhood Food Allergies Cost Billions Annually By Ruchi Gupta, M.D., M.P.H.

When my daughter was diagnosed with food allergies, it was life-altering. The diagnosis

required my family to rethink breakfasts, lunches, dinners, social outings and play-dates. My daughter’s food allergy diagnosis required my husband and me to take extra time shopping for, planning, and preparing meals. I am always on guard for an accidental ingestion and still get stressed every time I see the school’s phone number show up on my cell phone in the middle of my work day.

My experience of parenting a child with food allergies greatly informed my decision to study the cost of childhood food allergies in an effort to better explain the impact on families and the healthcare system in the U.S. My colleagues and I undertook a study on this very topic, and JAMA Pediatrics published our findings on Sept. 16, 2013.

In the U.S., where 1 in 13 children have a food allergy, we estimated the cost of caring for children with food allergies to be $24.8 billion annually, which translates into $4,184 per year per child. The dollar amount we arrived at was estimated from a survey that asked caregivers to answer questions regarding spending habits, regularity of medical treatment, and their estimated willingness to pay for a treatment if one were to become available.

Having a child with food allergy increases the yearly cost of raising a child by about 30 percent. According to the USDA’s “Expenditures on Children by Families” report for the year 2012, annual child-rearing expenses per child for a middle-income, two-parent family ranged from $12,600 to $14,700, depending on the age of the child. With the added costs identified in our study, these numbers would climb to a range of $16,784 to $18,884.

Direct medical costs—those expenses that consist of doctor’s visits, emergency department visits, and hospitalizations—account for an estimated $4.3 billion alone. The majority of the costs, over $20 billion, was attributed to out-of-pocket expenses including the costs of caretakers, special safe schools and camps, special foods and lost opportunities like parental career changes.

The largest cost to families is the loss of a job or the reduction in working hours due to the need to care for a child with food allergies. As many families know,

the stress of eating at an uncontrolled location, like school, makes parents nervous because an accidental ingestion can happen at any time. Accidental ingestions most often occur outside of the home,

making it particularly stressful for caregivers. This stress

sometimes results in a caregiver leaving a job

in order to ensure safer environments and more closely monitor his or her child. In addition, our research shows that

many caregivers forgo employment

opportunities that require leaving their child

unsupervised for long periods of time.

With more and more people being diagnosed with food allergy each year, we are likely to see these costs rise. Educating the public, creating safe environments for children at school and in the community, and investing in research to find a cure for this potentially life-threatening disease are imperative.

Other members of the research team include David Holdford, RPh, PhD, Lucy Bilaver, PhD, Ashley Dyer, MPH, Jane L. Holl, MD, MPH, and David Meltzer, MD, PhD. •

Ruchi Gupta, M.D., M.P.H., is an associate professor of pediatrics at Northwestern University Feinberg School of Medicine and a physician at Ann &

Robert H. Lurie Children’s Hospital of Chicago.

Food Allergy

FO O D A L L ERGY N E W S • PAG E 3

1 in 131 in 13 children has a food allergy—roughly

two in every classroom

$25 billion Caring for children with food allergies

costs families nearly $25 billion per year

50%The number of children with food allergies in the U.S. increased

50% between 1997 and 2011

Food Allergy by the Numbers

The largest cost to families is

the loss of a job or the reduction in working hours

due to the need to care for a child with food

allergies.

Food Allergy

PAG E 4 • FO O D A L L ERGY N E W S

Impact of Food Allergy on Inner-City Children with Asthma

Food allergies and asthma often go hand-in-hand, but researchers do not fully understand the relationship

between the two diseases. A research team led by Dr. James L. Friedlander (Boston Children’s Hospital/Harvard Medical School) surveyed 300 elementary school students with asthma who participated in the School Inner City Asthma Study (SICAS) from 2008 to 2011 to learn more about the connections between food allergy and asthma. The study, published online by the Journal of Allergy and Clinical Immunology: In Practice in September 2013, found that:

• 24 percent of the children with asthma also had a food allergy

• 12 percent of these children had multiple food allergies

• Peanut and tree nut were the most common food allergies

Asthmatic children who also had a food allergy had more asthma symptoms and lower lung function than those with asthma alone. These children also made more visits to health care providers and were more likely to be hospitalized and to use asthma controller medications. All of these

associations were even stronger for children with multiple food allergies.

Seventy percent of the participants were black or Hispanic, and annual household income for nearly half of the children surveyed (47 percent) fell below $25,000. The researchers concluded that “children with asthma and food allergies may require increased surveillance by their physicians and caretakers to optimize asthma control.” They also noted that future studies may be needed to further our understanding of “two highly prevalent and allergic conditions that affect many poor, urban youth.” •

New Study: Awareness May Be Stabilizing Emergency Department Visits

In 2011, researchers reported that food allergies were responsible for a significantly higher number of

emergency department (ED) visits than previously thought. That FARE-funded study, published in the Journal of Allergy and Clinical Immunology, found that food allergies caused 224,000 visits to the ED each year. The prevalence of food allergy continues to rise and one might expect that this growing number of people with food allergy would increase the number of ED visits caused by food allergy. However, a new study conducted by the same research team, also with funding from FARE, suggests that ED visits are not keeping pace with population increases in food allergy. The data suggest that greater awareness and education are having a favorable effect on the number of ED visits caused by food allergy.

The study, published in the September 2013 issue of Allergy and Asthma Proceedings, analyzes data from two large multi-center studies, as well as the National Hospital and Ambulatory Medical Care Survey (NHAMCS), conducted by the Centers for Disease Control and Prevention. The researchers, led by Dr. Sunday Clark (Weill Cornell Medical College, New York, NY),

examined trends in ED visits for food allergy from 2001-2009.

Looking across all ED visits for the eight-year period, regardless of cause, the proportion of visits for food allergy was stable for children—29 percent in 2001 vs. 28 percent in 2009—and declined for adults (18 percent in 2001 vs. 9 percent in 2009). The number of annual visits for children under 18 may have been slightly higher over the decade (approximately 92,000 visits in 2009 versus 77,000 visits in 2001), but the difference was not statistically significant. Among adults, however, ED visits significantly decreased from 147,000 in 2001 to 97,000 in 2009.

The authors caution that, based on their research, the number of U.S. ED visits for food allergy remains “significantly higher than prior reports” and that food allergies continue to result in a visit to a U.S. ED every three minutes. Still, given the rise in food allergies, it is encouraging to note that overall, researchers are not seeing a corresponding rise in ED visits. The most likely reason, say the authors, is that “efforts to educate both patients and clinicians on the appropriate management of food allergy are having beneficial effects.” •

FO O D A L L ERGY N E W S • PAG E 5

Food Allergy

Vitamin D and Food Allergy

Babies who are deficient in vitamin D are more likely to have a food allergy, according to a study of over

5,000 one-year-old infants conducted by Australian researchers. The study, published in the April 2013 issue of the Journal of Allergy and Clinical Immunology (JACI), provided the first direct evidence that an adequate vitamin D level may protect babies against food allergies.

Our bodies produce vitamin D when sunlight touches our skin; food contains only a small amount of this nutrient. Previous studies have revealed a possible link between food allergies and vitamin D insufficiency. They showed that there are more children with food allergies in countries that are farther from the equator—and where inhabitants are, therefore, less likely to be exposed to sunlight. What’s more, children born in the autumn and winter, when vitamin D levels are at their lowest, appear to be more likely to develop the disease.

In the Australian study, researchers found that babies with vitamin D insufficiency who had Australian-born parents (but not parents born overseas) were more likely to have a food allergy. These children also had a greater risk of developing multiple food allergies.

To explore the relationship between vitamin D and food allergy among American subjects, researchers at National Jewish Health (Denver, CO) used blood samples to examine the vitamin D levels in 39 patients with food allergy. For every one-unit increase in a patient’s vitamin D levels, the person’s chance of having a food allergy decreased by six percent. These findings, published in JACI in August 2013, confirm the data from the Australian study. Further, they underscore the need for more research to learn exactly how vitamin D affects the body’s immune response and what role it plays in food allergy. This could lead to studies to determine whether babies who are given vitamin D early on will be less likely to develop food allergies. •

Understanding Anaphylaxis

A new study out of Australia examines a large number of cases of anaphylaxis. This analysis also

provides information about the many different inflammatory mediators—proteins and other substances released by the cells of the immune system—that play a role in potentially life-threatening reactions.

The research team, led by Dr. Simon G.A. Brown (Western Australian Institute for Medical Research, Perth), reviewed 412 reactions in 402 people who were treated at eight Australian hospitals between 2006 and 2009. The results were published online by the Journal of Allergy and Clinical Immunology in August 2013. Funding for the study was provided by FARE.

Patients ranged in age from 3 to 99 years. Based on diagnostic criteria developed by the National Institute of Allergy and Infectious Diseases and FARE, these patients’ reactions were classified as skin-only reactions (97), moderate anaphylaxis (218) or severe anaphylaxis (97). Whether or not the allergen that caused their reaction had been identified, patients were classified as having moderate anaphylaxis if they had a skin symptom, such as itching or hives, and at least one respiratory or cardiovascular symptom, such as wheezing or a drop in blood pressure. Patients met the criteria for severe anaphylaxis if they had been exposed to a likely allergen hours or minutes before their reaction and had symptoms associated with two or more organ systems: the skin, respiratory, cardiovascular or gastrointestinal system.

Food, oral medicine and venom were the most common causes of anaphylaxis, although the order of precedence changed, depending on the severity of the reaction. Food was responsible for 32 percent of all reactions, for 43 percent of moderate anaphylactic reactions, and for 20 percent of severe anaphylactic reactions. Seventy-three percent of all patients were treated with epinephrine.

Medicine was the most common trigger of severe anaphylaxis, which was associated with older age and pre-existing lung disease. These patients suffered from respiratory failure, a severe drop in blood pressure, or both. They were also more likely to experience a second wave of symptoms that required additional treatment with epinephrine. In most cases, the delayed reaction occurred within four hours after the first administration of epinephrine.

Based on an analysis of patients’ blood samples, the researchers also found that all of the inflammatory mediators under study were associated with anaphylaxis. One group of mediators—mast cell tryptase, histamine, interleukins 6 and 10, and tumor necrosis factor receptor I—had a particular association with delayed reactions. The authors concluded that more research is needed to fully understand the roles of specific mediators. Their findings also confirm the importance of observing patients for an extended period, even if they have received epinephrine and the symptoms of anaphylaxis appear to have resolved. •

December Webinar: Novel Treatments for Food AllergiesJoin Dr. Wesley Burks, the Curnen Distinguished Professor and Chair of the Department of Pediatrics at the University of North Carolina in Chapel Hill, for our next webinar on Dec. 11 at 1 p.m. ET. Dr. Burks, chair of FARE’s Research Advisory Board, will describe theories behind current food allergy research, present early data on results and discuss the prospects for future research. This is your opportunity to ask questions of one of the leading experts on food allergy research! To learn more or register, visit www.foodallergy.org/tools-and-resources/webinars. Our webinars have sold out, so be sure to register today!

Food Allergy

PAG E 6 • FO O D A L L ERGY N E W S

Centers for Disease Control & Prevention Issue National School Food Allergy Guidelines

In October, the Centers for Disease Control and Prevention (CDC) published the fi rst comprehensive national guidelines to help schools address the needs of children with food

allergies. Th e CDC’s Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs were developed in consultation with the U.S. Department of Education and other federal agencies and organizations, including FARE, to help manage the risk of food allergies and anaphylaxis in schools.

Although 15 states have created statewide guidelines, and many school districts have implemented some of the steps needed to eff ectively manage food allergies and respond to food allergy emergencies, systematic planning has remained incomplete and inconsistent. Th e CDC’s guidelines are intended to bridge the gaps in food allergy management by guiding improvements in existing plans and practices, and by providing recommendations so that schools can develop a plan where none currently exists.

Th e guidelines provide practical information, planning steps and strategies for schools to create food allergy management and prevention plans that can help reduce allergic reactions and improve responses to life-threatening reactions. Ensuring the daily management of food allergies for individual children; preparing for food allergy emergencies; providing professional development

on food allergies for staff members; educating children and family members about food allergies; and creating and maintaining a healthy and safe education environment are all actions schools can take to create a safe learning environment.

“Th ese guidelines assist schools and early care centers in shifting their policies and practices from response to prevention and preparedness, making these settings safer for children with food allergies,” said CDC Division of Population Health Director Wayne Giles, M.D., M.S.

Although the plans and practices in the guidelines are voluntary, many of them reinforce federal laws and regulations that address the responsibility of schools to help children manage food allergies that may constitute a disability under federal law, and to ensure that children are not subject to discrimination on the basis of their disability.

Th e guidelines provide an important legal context to food allergy management in schools, and to the legal rights of parents/caregivers by referencing certain federal laws that prohibit discrimination on the basis of disability. Such laws include Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA), the Americans with Disabilities Act of 1990 (ADA), the Title II Amendments of 2008 to the ADA (ADAA), and the Family Educational Rights and Privacy Act (FERPA) of 1974.

Managing food allergies is a shared responsibility. Th e guidelines recommend that in order to eff ectively implement food allergy management plans, many people need to work together. Partnerships among all of these parties—school staff members including school boards, district staff and administrators; children and their families; and the family’s allergist or other doctor—are critical in the development and implementation of food allergy plans. Close working relationships established early on can help ease anxiety among parents, build trust, and improve the knowledge of school staff members.

As a trusted source of information for food allergy management in schools, FARE is working to help publicize and disseminate CDC’s guidelines. Th e recommendations can provide a foundation for schools to develop food allergy management practices and policies. According to the guidelines, “When schools have a plan in place to eff ectively manage the risk of food allergies, they are removing a health barrier that keeps some students from reaching their full potential.” •

educating children and family members about food allergies;

Laws to KnowSection 504: Section 504 of the Rehabilitation Act is a civil rights law that prohibits discrimination on the basis of disability in programs and activities that receive federal fi nancial assistance such as public school districts, some private schools, other state and local educational agencies, and postsecondary educational institution.

Americans with Disabilities Act (ADA): The ADA is a wide-ranging law that prohibits discrimination based on disability.

Individuals with Disabilities Education Act (IDEA): IDEA was enacted by Congress in 1975 to ensure that children with disabilities have the opportunity to receive a free appropriate public education.

Family Education Rights and Privacy Act (FERPA): FERPA protects the privacy of student education records, including their medical history.

‘Tis the Season for Charitable Giving: Make Your Year-end Gift to FARE

When you support FARE, you’re investing in programs and resources that change—and

save lives. No one should live in fear that a bite of the wrong food could trigger a life-threatening reaction. Please join our

efforts to make the world safer for people with food allergies.

In order to receive tax credit for 2013, please make your donation on or before December 31, 2013, using one of the following methods:

• Credit Card Online You may use your credit card to make a gift online on or before December 31, 2013, by going to www.foodallergy.org/donate.

• Credit Card by Phone If you wish to make a credit card donation by phone for end of year giving, please call (800) 929-4040 on or before December 31, 2013.

• Check If you wish to pay by check, please mail your gift to Food Allergy Research & Education, Development Department, 7925 Jones Branch Drive, Suite 1100, McLean, VA 22102. Please note: to receive 2013 credit for this gift, your check must be postmarked on or before December 31, 2013.

Monthly GivingJoining the Monthly Giving Club will save you time and money! By electing to send monthly contributions automatically through a checking account or credit card, more of your contribution will be

applied directly to our mission because monthly donations reduce our overhead for processing gifts.

A Gift of Stock or SecuritiesIf you are seeking information on how to make a gift of stock or securities, please call (800) 929-4040 on or before December 31, 2013.

Planned GivingA planned gift to a charity is one that is legally provided during the donor’s lifetime. It often provides immediate benefits to the donor and deferred benefits to the charity. It usually involves financial, estate and tax planning. For information on how to make your planned gift, call (800) 929-4040.

Giving TuesdayOn Tuesday, December 3, 2013,

FARE will join a worldwide call to action that will change the calendar and help make history. We are celebrating a day dedicated to giving—when charities, families, businesses, community centers, students, retailers and more will all come together for #GivingTuesday, a movement to celebrate giving and encourage increased, informed, and targeted giving during the holiday season. We are proud to be taking part in this worldwide event. Visit www.foodallergy.org/givingtuesday or stay tuned to our Facebook page for more on how you can participate in Giving Tuesday! •

Why I GiveKimberly Anderson, Mother, FARE Member, and loyal supporter since 2004.

My first child—Kohlson, now 15 years old—was diagnosed with food allergies around the time

of his first birthday, as I tried to introduce cow's milk into his diet. He began having hives. We went to an allergist for testing, and Kohlson's skin test was positive. Even though we eliminated milk from Kohlson's diet, he continued to have reactions involving hives as well as severe eczema. The allergist expanded his testing and discovered multiple other food allergies, including nut allergies. Fortunately this was picked up prior to feeding Kohlson any nut product.

We discovered FARE (then FAAN) through a fellow mother of nut-allergic children in a local group of friends.

FARE is important to us for many reasons: research for a cure and/or treatment for food allergies, supporting legislature, educating the section of the public not directly affected by food allergies, supplying updates, recalls, recipes, and more. •

FO O D A L L ERGY N E W S • PAG E 7

Food Allergy

“I have a daughter that has a severe peanut allergy…She is now 19 years old and was diagnosed at the age of 2. When she was first diagnosed 17 years ago, it was VERY uncommon. I felt like I was alone. Thanks to great advice, columns, newsletters and materials from FARE (then FAAN), I was

able to handle this diagnosis and feel like I wasn’t alone. This organization was helpful

in so many ways!”

~Testimonial from Great Nonprofits website

“My son has life-threatening food allergies to tree nuts. FARE has been my go-to from the beginning! They have been there to not only guide me through advocacy issues, and

educate myself and my family, but they have held my hand when I needed some

emotional support! FARE is TRULY amazing and the people who work there are heroes to me. They are fighting a huge battle, and it

would be impossible for me to do this alone. They are a HUGE part of my village in raising

my children!”

~Testimonial from Great Nonprofits website

Emotional Health for Parents of Children with Food AllergiesBy Linda Herbert, Ph.D.

If you’re reading this newsletter, you probably already know that parenting a child with a food allergy can be stressful!

Daily management is time-intensive and you may experience a mix of emotions, such as sadness, worry, confusion, uncertainty, frustration, anger and anxiety.

The first thing to remember is that these are all very normal reactions to food allergies and you are not the only parent to experience them! Research shows that parents of children with food allergy sometimes experience elevated stress, anxiety and worry, and sometimes report lower quality of life as a result of food allergies.

It’s also normal to go through periods of time when you experience these emotions in different amounts. For example, transitions to new schools or new play groups, developmental changes - such as increased adolescent independence - and reading about a scary food allergy-related event in the news can be particularly stressful. But you may also have times when you feel okay. This is also normal!

The second thing to remember is that learning and practicing ways to improve your ability to cope with stressful food-allergy-related situations will not only help reduce your stress and anxiety, but your child’s too! Modeling positive coping strategies will have a positive impact on your family. Below are a few strategies to bear in mind:

1. Use deep breathing throughout the day to calm yourself during stressful situations. You can do this any time and any place because it’s just breathing! Some parents find it helpful to do this every morning before starting their day and every evening before bed.

How to do this: Make yourself aware of your body. Check for tension; begin with your feet and move upward to your head, allowing a

comfortable wave of relaxation to wash away any tension. Pay attention to your breath as it enters and leaves your body. Take a deep breath. Inhale slowly through your nose. Notice your lungs and abdomen expanding. Hold it for a moment, then exhale even more slowly through your mouth, letting your body relax. Repeat this process for 2-3 minutes until you feel the tension leaving your body.

2. Use problem solving techniques to manage situations that you can control. Learning ways to improve your problem-solving ability will help you solve your problems instead of worrying about them.

How to do this: Use a problem solving technique to anticipate and address situations early. First, IDENTIFY all aspects the problem. Second, DEFINE each aspect of the problem, including the perspectives and goals for everyone involved. Third, EXPLORE all possible solutions—even ones you don’t think will work! Fourth, ACT on the solution. And fifth, LOOK BACK and reflect on the results. Try another solution if needed.

3. Acknowledge that sometimes you can’t change the situation, but you CAN change how you react to it. We all respond to situations with automatic thoughts, behaviors, and consequences. When we’re stressed, most of these thoughts are negative. Changing negative thoughts into positive thoughts will reduce your stress and improve the situation.

How to do this: Identify negative thoughts, such as, “I can’t control my child’s food allergies,” and change them to positive thoughts, such as, “I know how to explain food allergies to my child’s teacher and other parents. I’m a good parent and food allergy manager!” The hardest part of changing your thinking is identifying negative thoughts, so write down negative

thoughts and then write a positive thought next to it. Repeat this positive thought to yourself as needed.

4. Expand your network of support. It is important to recognize that it takes a team to manage food allergies and keep your child on track developmentally.

How to do this: Think about all of the people who contribute to your child’s growth and development. Is there something missing from your team? Is there a type of help that you are not getting? In what ways would you like the level of support on your team to be different? Think about the answers to all these questions and start to identify people who can help you.

5. Take time for yourself! Parenting a child with food allergies is only one of the roles that you have, so it is important to acknowledge your other roles, such as spouse, friend, employee, sibling, etc.

How to do this: It’s very important to try to find something you like to do that you can work into your regular routine that encourages a healthy lifestyle for you and your child. Identify things that you can do. Examples include exercise, reading a book, talking on the phone with a friend, taking a bubble bath, playing a musical instrument, etc. Schedule at least one of these activities a week. And remember that taking time for yourself makes YOU healthier, which makes you better able to care for your child! •

Linda Herbert is a clinical psychologist in the Department of Allergy and Immunology at Children’s National Medical Center in Washington, D.C.

PAG E 8 • FO O D A L L ERGY N E W S

Food Allergy Learning and

practicing ways to improve your ability to cope with stressful food-allergy-

related situations will not only help reduce your stress and

anxiety, but your child’s too!

Sweet Potato Salad with Rosemary-Honey VinaigretteINGREDIENTS

4 ½ cups sweet potato, peeled and cubed 2 T. olive oil, divided ¼ cup honey 3 T. white wine vinegar 2 T. chopped fresh rosemary 2 garlic cloves, minced ½ tsp. salt ½ tsp. freshly ground pepper

DIRECTIONS

Line a 5x10-inch jellyroll pan with aluminum foil. Coat foil with vegetable cooking spray.

Toss together sweet potato and 1 T. oil in pan. Bake at 450 degrees for 35 minutes or until tender.

Whisk together remaining 1 T. oil, honey, and next 5 ingredients in a large bowl. Add sweet potato; toss well. Cool.

Cranberry & Apricot ChutneyINGREDIENTS

1 ¼ cup sugar ½ cup water

DIRECTIONS

Combine in 3-qt. pan. Cook until sugar is dissolved, bring to boil.

Stir in:

3 cups cranberries ¾ cup snipped dried apricots 2 tsp. ginger 3 T. vinegar 3 T. brown sugar

Reduce heat. Simmer uncovered for 5 minutes, or until berries pop and mixture starts to thicken. Stir occasionally. Remove from heat. Serve plain or over allergen-free cream cheese with safe chips or crackers.

Holiday Pineapple SlushINGREDIENTS

1 20-oz. can crushed pineapple 1 6-oz. can frozen orange juice concentrate 1 6-oz. can frozen lemonade

concentrate 4 or 5 bananas, mashed 1 cup sugar 1 12-oz can ginger ale

DIRECTIONS

Mix and freeze until firm. Stir several times while freezing (about every hour). Serve as snack or dessert with holiday meals. •

Recipes courtesy of Mary Beth Feuling, MS, RD, CNSD, Gastroenterology Clinical Dietitian and Nutrition Specialist, Children’s Hospital of Wisconsin.

Allergy-Friendly Recipes for Holiday Gatherings

FO O D A L L ERGY N E W S • PAG E 9

Join Team FARE

Play a critical role for FARE by hosting a fundraising event to support food allergy research and education. With your own personal fundraising coach, campaign

and website, the options are endless. Whether you are participating in an athletic event, an obstacle race, celebrating a special holiday or creating a memorial campaign for a loved one, Team FARE offers a simplified way to spread the word about your story in order to collect funds for the mission.

One of the first people to sign on with Team FARE was Sarah Doran, who did the half Ironman triathlon in honor of her son Christian, who has multiple food allergies.

“I am doing this race to raise money to go toward finding a cure; to help ensure that Christian, and everyone like him, can eat ANYWHERE, ANYTIME, and most importantly, ANYTHING,” writes Sarah.

Last month, Sarah swam 1.2 miles, biked 56 miles and ran 13.1 miles—70.3 miles in all—and raised nearly $12,000 for FARE!

FARE has been fortunate to have many dedicated individuals supporting their loved ones by participating in events that benefit FARE.

Meghan Dolan ran the NYC Half in support of FARE by raising $1,075 to honor her sister, now 25, who has been allergic to milk, seafood and tree nuts since the age of 11 months.

“My love for my sister combined with my passion for educating others on food allergies, my love of running, and deep appreciation for all the hard work that those at FARE do came together

quite perfectly and allowed me to use this half marathon as a platform to raise awareness to both FARE and food allergies. It was one of the easiest decisions I have ever made,” said Dolan.

To raise funds and awareness, she set up a website and used emails and social media to gain support. In addition to friends and family, she also sought corporate support from food allergy friendly companies.

With the new Team FARE website, similar fundraising tools and tactics are all available to add to your successful fundraising campaign. Join Team FARE by visiting teamFARE.org or contacting your regional office today. •

FARE Advocates Network

In September, FARE launched its Advocates Network, giving food allergy advocates the opportunity to join in legislative campaigns,

communicate with legislators, receive advocacy updates and strategies and, most importantly, improve access and safety for people with food allergies. On the FARE website, advocates can enroll in the Advocates Network and be directed on the Action Center to pre-addressed messages to either their state or federal representatives. The site allows for the coordination of FARE advocates by legislative districts and the targeting of key legislators who will have the most direct impact on food allergy policy. Also on the site are advocacy communication tools and resources on food allergy laws and regulations. Visit www.foodallergy.org/advocacy to sign up today! •

Preventing Cross-Contact in Food Production

When President Obama signed the Food Safety Modernization Act (FSMA) in January of 2011, it marked one of the most important changes in food regulation since the 1930s. Up until

now, food manufacturers and processers have operated ‘reactively’ to food hazards; initiating recalls when discovered. Now, for the first time, federal law will require them to proactively identify potential food hazards in their processes and anticipate how they will prevent them from occurring. Importantly, FSMA also identified food allergens as a food hazard, which means that manufacturers are required to anticipate any and all possible cross-contact risks in their systems and institute “preventive controls” to eliminate them and redress any problems.

Noting that undeclared food allergens are a leading cause of recalls, FARE commends the FDA for looking at food allergens within the preventive controls framework and recognizing them as hazards that can have lethal consequences if ingested unintentionally. Earlier this month, FARE submitted its comment to the U.S. Food and Drug Administration in response to its request for comments on the proposed rule for preventive controls. FARE endorsed the proposed rule, with some noted recommendations, which you may read in the Advocacy section of our website. •

PAG E 10 • FO O D A L L ERGY N E W S

Food Allergy

On October 7-8, FARE hosted a meeting of the International Food Allergy & Anaphylaxis Alliance (formerly the Food Allergy & Anaphylaxis Alliance) at the Hyatt Dulles, just outside of Washington, D.C. The meeting featured representatives (pictured at left) from member organizations from 14 countries (Argentina, Australia, Canada, Chile, France, Hong Kong, India, Israel, Italy, Japan, Mexico, New Zealand, the United Kingdom, and the U.S.). Topics included global trends in access to epinephrine, emergency care plans, accommodating food allergies at colleges, food labeling, incident reporting, food allergy management at schools and information on the latest research.

FARE Walk for Food Allergy Makes History

T his fall, we made history.

For the first time, the Walk for Food Allergy program raised more than $3 million in one walk season! At the time of publication, the 2013 FARE Walk program has raised $3.5 million! Funds raised by our walkers and volunteers enable FARE to develop world-class educational programming and invest in research to find a cure. With your help, we can expand our education and advocacy efforts and fund clinical trials that will one day help reduce the risk of life-threatening reactions.

Throughout the year, our walkers and volunteers, together with our sponsors, have been setting new records in a number of their hometown walks and doing a tremendous job raising funds for food allergy education, advocacy, research and awareness programs.

There’s no stopping now.

“As a parent and a FARE volunteer, I’m thrilled with the success of the Westchester

Walk,” said Bonnie Weinbach, who chaired the walk in Westchester, which set a new record for funds raised at a FARE walk. “Not only did everyone have a terrific time, but the funds we raised will enable FARE to make a difference for so many families like ours.”

“FARE is doing wonderful things and we are incredibly thankful,” said Colleen D., whose son is allergic to milk, egg, tree nuts and peanuts. “We had a blast at the walk in Rockville, Md., recently and we appreciate the resources FARE provides online.”

Lisa S., who attended the walk in Chicago, wrote, “The walk was beautiful, memorable and we cannot wait until next year!”

In fact, we already have begun planning for next year! In the meantime, we still have a few walks left in 2013, and every walk team throughout the country is still accepting donations through the end of the year, so it’s not too late to donate.

Thank you for your support! •

Save the Date!

FARE’s first national Annual Conference will take place June 20–21, 2014 at the Hyatt Regency

O’Hare in Rosemont, IL.

The conference will feature world-renowned speakers, experiential sessions (such as a 504 Plan clinic, examples of relaxation techniques, and an exhibit on how to safeguard your home kitchen), teen programming and multiple learning tracks for those newly diagnosed and those who have more experience with food allergies.

A Call for Proposals to speak at the event will be announced in late December. For more information, visit www.foodallergy.org/conference. •

Food Allergy Bloggers Conference Debuts in Las Vegas

On November 2–4, FARE was proud to be a major sponsor of the inaugural Food Allergy Bloggers

Conference (FABlogCon). This three-day event in Las Vegas brought together bloggers, advocates, healthcare professionals and authors to discuss how we can work together to raise awareness and best support the food allergy community. Topics covered include anaphylaxis, recipe development, facing adversity, 504 plans, effective advocacy, allergy testing, and education. FARE’s Vice President of Communications Veronica LaFemina spoke on the conference’s closing panel and FARE staff attended the event. The conference coincided with the FARE Walk for Food Allergy in Las Vegas, where the conference attendees joined hundreds of walkers to raise funds and awareness in the community.

FARE would like to thank FABlogCon founders, Jenny Sprague and Homa Woodrum, and the FABlogCon Advisory Board, for organizing the event—it was an important opportunity for influencers in the field to come together and discuss how to advance our cause and strengthen our community. •

FO O D A L L ERGY N E W S • PAG E 11

Thanks to all families who joined us earlier this month at FARE's Eighth Annual Teen Sum-mit, where we had the biggest attendance yet! We hope to see you next year!

protocols; certify a national network of highly qualified food allergy centers to conduct these studies, collect and share data, and provide patient care; and promote the rapid recruitment of patients.

Develop the scientific understanding, tools, and resources necessary to facilitate research that will build a pipeline of new therapies.Unlike many other diseases, the underlying causes of food allergy—and the reasons for its rapid rise over the past 25 years—are unknown. Basic science aimed at answering fundamental questions is key to developing effective treatments. In addition, it is crucial that we provide researchers with the tools they need to succeed, including an online food allergy research portal and a patient registry and biorepository that capture critical data, including clinical histories and biospecimens (serum, DNA, and RNA samples).

Attract outstanding investigators to the field of food allergy and develop their careers.FARE will provide seed funding, career development grants, and awards that promote exploration of new solutions, motivate young investigators, and encourage preeminent researchers from other disciplines to apply their talents to food allergy.

To read “A Vision and Plan for Food Allergy Research” and learn more about FARE’s research vision, visit www.foodallergy.org/research/strategic-plan. •

Medical Advisory Board Gains Two Members

FARE recently welcomed two new members to its esteemed Medical Advisory Board. Seema Aceves,

M.D., Ph.D., and Carla Davis, M.D., join some of the nation’s leading experts in the field of food allergy who serve on our Medical Advisory Board. FARE’s 13-member board plays an invaluable role in advising the organization on food allergy education initiatives, as well as providing medical review of FARE’s publications and web content.

Dr. Aceves is an associate professor of pediatrics in the Division of Allergy-Immunology-Rheumatology at UC San Diego School of Medicine and directs the Eosinophilic Gastrointestinal Disorders Clinic at Rady Children’s Hospital—San Diego. Dr. Davis is a specialist in the Immunology, Allergy and Rheumatology

Section of the Department of Pediatrics at Baylor College of Medicine and established a clinic dedicated to the treatment of food allergy and eosinophilic gastrointestinal disorders at Texas Children’s Hospital. Welcome, Drs. Aceves and Davis! •

PAG E 12 • FO O D A L L ERGY N E W S

Food Allergy

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A Vision and Plan, cont.

The federal legislation would provide an incentive for states to require schools to stock epinephrine, encouraging this year’s momentum in state legislatures. Currently only four states—Maryland, Nebraska, Nevada and Virginia—require their schools to stock epinephrine.

In addition to FARE, the American Academy of Allergy, Asthma & Immunology, the American Academy of Emergency Medicine, the American Academy of Pediatrics and the National Association of Elementary School Principals endorsed the School Access to Emergency Epinephrine Act. •

President Signs Bill…, cont.