Holiday Gifts that Give Back

Supporting the causes that mean the most to you and your family can be a great way to celebrate the holiday season. As you start thinking about holiday gifts, there are many ways to give back and support food allergy education, research, advocacy and awareness programs – from purchasing a FARE membership for a family member, to books, clothes and jewelry that help support food allergy awareness. You can get your holiday shopping done and start making a difference today!

Membership
The gift of membership is one that makes an impact every day in the lives of the individuals and families affected by food allergies and anaphylaxis. Your gift gives the recipient access to our outstanding member benefits, while connecting them with other individuals and families managing food allergies.

MassCanvas Food Allergy Awareness T-shirts
Kids and adults alike love wearing these shirts to help raise awareness about food allergies. They were designed by professional designers and selected by you! Below are the official winning designs, sold in support of FARE’s mission – 20% of net proceeds go to FARE.

 

Holiday Cookbook
Stuffed with more than 150 tempting recipes, this cookbook offers helpful tips for substituting foods, cooking, and hosting safe celebrations throughout the year. With many common allergens avoided in every recipe, this will be your first reference for festive, allergen-free recipes.

Children’s Books

Nutley the Nut-Free Squirrel
This educational picture book about a squirrel with a nut allergy is written by a mother of three children with food allergies. Reading it to your children or in a classroom can help raise awareness about food allergies in a fun and entertaining way. All proceeds from the sale of the book go to FARE!Nutley_cover

Mangos for Max
Written by a food allergy mom, this children’s book aims to introduce food allergy to preschool and young elementary school children in a gentle manner. The author is donating 10 percent of proceeds from the book to FARE.

What Treat Can Ruben Eat?
By writing this book, food allergy dad John-Ruben Aranton hopes to educate more people on the potential dangers of food allergies and raise awareness to help create a safer environment for his daughter and others. A portion of the proceeds will be donated to FARE.

She Beads and He Beads Food Allergy Awareness Bracelet
The perfect gift for someone in your life who wants to raise awareness about food allergies in style! From every bracelet sold, $12 will be donated to FARE.

MedicAlert “MyVoice” Program and Medical Identification
Wearing medical identification at all times can help give you peace of mind that you are prepared should a life-threatening reaction occur. The MyVoice program is there for you to help communicate your vital medical information in an emergency situation. In addition to a 10% discount on new memberships, 20% of the proceeds from new and renewing memberships through the MyVoice program will support FARE.

More Items Available in FARE’s Online Store
From educational booklets and training tools, to more cookbooks and food allergy awareness materials, FARE’s online store has a variety of resources to help you live well with food allergies.

Thank you for your continued support, and we wish you a wonderful holiday season!

Your Questions Answered: Anaphylaxis

In our October webinar, Dr. Robert A. Wood, a professor of pediatrics and chief of Pediatric Allergy and Immunology at Johns Hopkins, and professor of International Health at the Johns Hopkins Bloomberg School of Public Health, focused on anaphylaxis, a severe allergic reaction that is potentially fatal.

Dr. Wood, who is also a member of FARE’s Medical Advisory Board, discussed the risks, symptoms and treatment of anaphylaxis; dispelled myths; and answered questions from the audience. Dr. Wood’s full presentation can be viewed on our website, but here are his responses to some of the questions submitted by audience members.

  1. How can you distinguish between symptoms of anaphylaxis and other illnesses? (e.g., asthma attack, random hives, stomach cramps, or anxiety attack)
    The symptoms can be identical. What we want to do is interpret the symptoms in the context of the overall situation and the chance that there’s been a food exposure. So if your child gets random hives or stomach aches and they’ve been home for the last several hours, and you know what they’ve eaten, and you’re confident they’ve not had an exposure; you can be quite confident these are random hives or stomach cramps. On the other hand, if you’re out at a family party for the holidays, and the food has not been under your complete control, and they show up with these same symptoms, we would be more worried that this may indicate a food exposure and the beginning of an anaphylactic reaction.
  2. Are there any clear differences in the way anaphylaxis progresses in children versus adults?
    The overall answer is no. The thing that does change is that as people get into middle age they’re actually more prone to the cardiovascular or blood pressure effects of an allergic reaction. One reason we don’t see blood pressure being the cause of death in children is that the heart and blood pressure systems in kids and young adults is very strong and typically can keep going in spite of a reaction. But as we hit middle age and older, our blood pressure system may not be as sturdy, and adults in that age group will be more prone to have the low blood pressure or anaphylactic shock.
  3. Is there any way to find out how much allergen it would take to cause an anaphylactic reaction in our child?
    We generally don’t have a clear answer to this. With the patient who comes in and has had 10 or 15 or 20 reactions, we can carefully look at each of their exposures and be able to say, “Okay, with this reaction, with this much exposure and that’s how they reacted.”  Otherwise I cannot look at a test result, I cannot look at a prior reaction or two and make any real prediction about what the reaction will look like or how much allergen it will take to cause that reaction. Some people want to undergo formal food challenges to get this answer. In a food challenge, we’re obviously intentionally feeding someone what they might be allergic to, and many times inducing an allergic reaction. But it is not designed to answer the question posed here, which is how much allergen it would take to cause an anaphylactic reaction. It doesn’t answer that because when we do a food challenge, we stop the challenge at the first sign of the reaction. We don’t push it to say, “How much more would it take to lead to anaphylaxis?” That would not be an ethical way to practice. So even a food challenge does not typically answer that question.
  4. If a person is having an anaphylactic reaction and doesn’t respond to epinephrine, is there anything that a hospital can do at that point?
    Absolutely yes. Now, there are cases where the reaction has gone too far by the time the patient gets to the hospital that there is nothing more to do. But, if for example someone was still having breathing problems after getting epinephrine, it is possible in those cases to put a breathing tube in place or to put a tracheotomy in place to make sure that air is still being provided into the lungs to maintain breathing. If someone is having low blood pressure because of their reaction that epinephrine didn’t stabilize, IV fluids and the use of these other medications can be extremely helpful. So, thankfully in most instances, if we’ve done the appropriate home management of an anaphylactic reaction, the response you get from the emergency room is, “What are you doing here? Your child looks fine.” The truth is that they look fine because you treated them appropriately. In most instances, a single dose of epinephrine along with a dose of antihistamine will completely reverse the reaction. So they do look fine but it doesn’t mean they shouldn’t be there. You want them there for the 20% of the time that additional medications are needed.
  5. Are people with asthma more at risk of fatal anaphylaxis, and why?
    Yes. Because the main reason that people die of anaphylaxis is that their airways shut down. Because of the underlying asthma, your airways are likely to be more sensitive to an allergic reaction.
  6. Does the risk of an anaphylactic response increase with each exposure to an allergen?
    Absolutely not. The next reaction is completely unpredictable. The biggest variable in that next reaction will be the dose of exposure. Since we have no idea what that dose will be, we can’t predict the reaction severity. Think back to the examples I was giving: If this reaction occurred to a contaminated cookie that had 1/100th of a peanut, and the next reaction occurred to eating a full cookie that had well-disguised peanut that had the equivalent of five peanuts in it, that reaction just had a 500-fold higher dose and will be much more severe than the one before. Again, you can’t take any reassurance that the last reaction wasn’t severe. If someone has had a huge exposure with only a mild response, that is a little bit reassuring. But because these allergies can change over time, even that wouldn’t make us say, “Throw away your epinephrine.”
  7. For people with peanut or tree nut allergies, how dangerous are ball games, airplanes, and other places with lots of nuts?
    As a general rule, because ingestion is the main root of exposure that poses risk, being around nuts is not going to be dangerous. Now, airborne reactions can occur. They will typically only happen though if the nuts are being disturbed in a way that will create a dust and if you are in a very confined space. So if you think about how that might happen, you will definitely get more peanut allergen in the air if you’re cracking open nuts, especially if you’re throwing nuts on the floor and walking on the shells. Each of those activities may create some dust that does contain allergen. If you’re in a contained space – if you’re in the waiting area of a restaurant and everyone is cracking open nuts, and the floor of that waiting area has an inch-thick peanut shell on it – that is a place that you could have a dangerous airborne reaction. That same amount of peanut at a ball game, though, virtually never causes problems. In the outdoor air, it’s very rare to see true airborne reactions. Now on airplanes, if everyone was cracking open nuts, airplanes would be a scary place. But the truth is that just by opening bags of peanuts, there’s very little peanut allergen getting into the air. We can’t say that it’s a zero risk situation. I can’t say that ball games are zero risk; I can say they’re very low risk. For me and my peanut allergy, I don’t worry about ball games or flying at all. I have no concern about it whatsoever. If my patients want to avoid ballgames or be on peanut-free flights, I don’t say that’s wrong. Although I think that normalizing life as much as possible and finding a cooperative airline that won’t serve peanuts, at least for peace of mind, may be a reasonable approach to be less anxious and still enjoy a family trip or vacation.
  8. You have had several anaphylactic reactions. In your own words, can you please describe what you or someone experiencing this type of reaction may be feeling?
    I can tell you that I’ve been very fortunate going nearly 20 years since my last anaphylactic reaction. But the memory of my last reactions is still very vivid, so this is something that sticks with you. I can tell you that my reactions, of which I’ve had 5 or 6 in my lifetime in the very severe category requiring epinephrine, one requiring multiple shots of epinephrine, all looked different. None of them looked the same. One had a very abrupt onset, one took 20 or 30 minutes, one had a lot of GI symptoms. All of them thankfully gave me an immediate reaction in my mouth, so I had a warning sign that I was eating a problem food. I was eating a food that was supposed to be completely safe, was promised to be safe, but while I was eating it I recognized that my mouth was itchy and I knew something was wrong. Then I could intervene, obviously to stop eating but also to begin treatment. Since I have this history of severe reactions, I will immediately administer epinephrine; there would be no reason for me to wait at all.

Questions about Treatment:

  1. Should RAST [blood test] or skin test scores be used to change an emergency care plan? If not, what are they useful for from a severity standpoint?
    The answer to the first question is absolutely not. They have no bearing on an emergency care plan. For the second question – they have very little use from a severity standpoint. So these are valuable tests to make a diagnosis. They are problematic even in making a diagnosis, but they are truly not useful in designing your child’s emergency care plan. You can have people with low scores and severe reactions, people with high scores and less severe reactions. If you take a large group, if you took 100 people with peanut allergy, you would see somewhat more severe reactions in those at the very high end of the scale. But you would see dramatic exceptions at either end. Meaning you would see some people at the very high end of the scale who have very minor reactions and some people at the very low end of the scale with very severe reactions. So we have never, and until we get better tests never will, devise our action plan around a test score.
  2. Can a person’s allergy severity worsen to the point that their anaphylaxis plans should change?The answer is absolutely, positively yes. One of the most important things that we do, is every time a reaction happens, we review that reaction. We review it from several standpoints. One of them is we want to think about how it happened – is it a situation that could be avoided the next time? There are always lessons to be learned from a prior reaction that may help the next one. We want to think about what was done during the reaction – was it done consistent with or not consistent with the action plan that we’d established? And was the reaction different than we expected? We may get very good news. We may get news that this child has virtually outgrown their milk allergy because they just got a whole big slug of milk and they barely reacted. That would downgrade their action plan. But more so we want to be in the knowledge of worse reactions to be able to upgrade the emergency care plan to have a more aggressive treatment plan if someone has presented with a more severe reaction than what we anticipated.
  3. Can antihistamines help after epinephrine is given?
    Antihistamines have no life-saving capacity, but they can help. They can help some more mild symptoms. We’ve seen people get epinephrine up front in a reaction, look very good, and then get hives later. I think that giving the antihistamine up front may prevent some of those later hives from happening.
  4. Is it ever worth giving oral antihistamines if that might mean losing time to administer epinephrine during what might rapidly progress to an anaphylactic reaction?
    Clearly, if we knew that reaction was progressing rapidly to anaphylaxis, we wouldn’t wait around and give an antihistamine. But if we’re in one of these situations where we interpret that this might not be such a severe reaction, giving antihistamine at that moment might be very appropriate, while having the epinephrine immediately on hand to administer if the reaction progresses.

We host an educational webinar every month. A recording of our November, “Safely Navigating the Restaurant Scene,”  is available on our website here: http://www.foodallergy.org/tools-and-resources/webinars

Allergy-Friendly Thanksgiving and Hanukkah Recipes

Thanksgiving and Hanukkah are both holidays with long-standing traditions – and this year they fall at the same time on the calendar. Whether your traditions involve turkey, lighting the menorah, or football, it’s a time to celebrate with friends and family. Here are a few recipes for holiday classics to help you maintain long-standing culinary traditions while creating some new allergy-friendly ones! If you’d like to talk more about holiday meal preparation, join our Twitter chat on November 19! More details here.

Thanksgiving Recipes

Leftover Turkey Casserole

  • pastry dough for 9-inch double-crust pie*
  • 1/2 cup milk-free margarine
  • 1/2 cup flour
  • 1 tsp. salt
  • dash of pepper
  • 1/4 cup plus 1/3 cup soymilk, divided
  • 2 cups chicken broth*
  • 3 cups cooked turkey, cubed
  • 3 potatoes, cooked, peeled, and cubed
  • 1 (16-oz.) package frozen mixed vegetables
  • 1/2 tsp. dried thyme

Preheat oven to 375°. Divide the pastry dough in half. Roll out half of the dough on lightly floured surface into 14-inch circle. Gently fit rolled-out dough into 2-qt. deep-dish casserole; set aside. Trim pastry to 1-inch from edge of dish; set 1-inch strip aside. Roll out remaining dough on lightly floured surface into 10-inch circle; set aside.

In medium saucepan, melt margarine. Add flour, salt, and pepper, and stir until combined. Slowly add 1/4 cup soymilk and chicken broth. Cook over medium heat, stirring until thick and smooth. Remove from heat and pour into large bowl. Add 1/3 cup soymilk; mix well. Stir in remaining ingredients. Spoon into pie crust. Cover casserole dish with 10-inch pastry circle and fold 1-inch strip around the top edges of the pastry. Crimp to seal, and cut four slits in top to vent. Brush pastry with water. Bake 60 to 70 minutes, or until golden brown. Let stand 10 minutes before serving.

*Check ingredient labels for any packaged dough.

Sweet Potato Pie

  • 1 (40-oz.) can sweet potatoes, drained
  • 1 tsp. ground cinnamon
  • dash of ground nutmeg
  • 1 cup sugar
  • 2 T. milk-free, soy-free margarine, softened
  • ½ tsp. salt
  • 1 cup apple juice
  • 2 packets unflavored gelatin
  • 4 T. warm water
  • 1 pie crust (wheat-free if needed), unbaked*

Preheat oven to 350 degrees. In large bowl, mash sweet potatoes. Add cinnamon, nutmeg, and sugar. Mix well. Stir in margarine, salt, and apple juice. Set aside. In small bowl, combine gelatin and warm water, stirring until gelatin dissolves. Add to sweet potato mixture. Mix well. Pour into pie crust. Make 1 hour. Allow pie to set overnight before serving.

Note: This recipe was tested using a glass pie dish. Increase the oven temperature by 25 degrees if you use an aluminum pie pan.

*Be sure to check ingredient labels for any packaged products.

Veggie Rice Stuffing

  • 1 ½ cups rice, uncooked
  • ¼ cup bacon drippings
  • 2 ½ cups onion, chopped
  • 1 ½ cups green onion tops, chopped
  • 1 ½ cups celery and leaves, chopped
  • ½ cup red bell pepper, chopped
  • 1 ½ tsp. salt
  • ½ tsp. ground black pepper

Cook rice according to package directions. Set aside. In large skillet over medium-high heat, combine bacon drippings, onion, green onion tops, celery, and bell pepper. Cook until soft, sitting constantly. Stir in salt and pepper. In large bowl, combine rice and vegetable mixture. Toss gently. Serve as is or use as stuffing for poultry.

Hanukkah Recipes

Potato Pancakes

  • 1 cup cooked potatoes, mashed
  • 1 cup cooked potatoes, finely grated
  • ½ tsp. salt
  • ½ tsp. baking powder
  • 2 T. milk-free, soy-free margarine

In large bowl, combine all ingredients except margarine. Set aside. In large skillet, melt margarine over medium heat. Spoon potato mixture into skillet, forming pancakes; cook until golden brown on bottom; flip and continue cooking. Serve plain or with maple syrup.

Fudge Layer Cake

  • 2 cups sugar
  • 1 14/4 cups milk-free, soy-free margarine, softened
  • 4 ½ T. water, 4 ½ T. oil, 3 tsp. baking powder; mixed together
  • 2 tsp. vanilla extract
  • 4 ½ cups flour
  • ½ tsp. salt
  • 1 ½ tsp. baking powder
  • 1 ½ tsp. baking soda
  • ¼ tsp. cinnamon
  • 1 cup unsweetened cocoa powder
  • 1 ½ cups warm, mild coffee

Preheat oven to 350 degrees. Lightly grease and flour two 9-inch cake pans. In large bowl, blend sugar and oil. Add water, oil, and baking powder mixture; and vanilla extract; mix well. Combine remaining ingredients, and stir until well-blended. Batter will be thin. Pour into prepared pans and bake 35 to 40 minutes, until toothpick inserted in center comes out clean. Cool on wire racks. Frost one layer with Fudge Frosting; place second layer on top, and frost as well. Garnish with colored sugar, miniature plastic dreidels, or Hanukkah candles, as desired.

Fudge Frosting

  • 2 T. shortening
  • ¾ cup milk-free, soy-free margarine, softened
  • 1 tsp. vanilla extract
  • ¾ cup unsweetened cocoa powder
  • ½ cup water
  • 3 to 4 cups confectioners sugar

In medium bowl, cream shortening, margarine, and vanilla extract. Add coca powder, water and 1 cup confectioners sugar. Mix well. Continue adding sugar, 1 cup at a time, until mixture reaches desired consistency. Spread evenly over cooled cake.

Happy Thanksgiving and Happy Hanukkah, from our FARE family to yours!

FARE Food Allergy Fundraising Champion: Jessica St.Louis

jessicastlouisJessica St.Louis is not only the mother of children with multiple food allergies, she’s the author of a new book titled “Mangos for Max,” which aims to introduce food allergy to preschool and young elementary school children in a gentle manner. She is also generously donating 10 percent of proceeds from the book to FARE to help us fulfill our mission of ensuring the safety and inclusion of those living with food allergies. We asked Jessica to tell us more about her book, available on Amazon and in select book stores:

Tell us about your book. How did you think of the idea? Why did you decide to write it?

My book is about a monkey who is allergic to bananas.  Most people associate monkeys with bananas, so I thought this would be a good way to describe food allergies to a younger audience. When my oldest son was entering preschool, I wanted to find a book that I could read to his class that would describe food allergies without all of the details of anaphylaxis. I felt some stories could be a little overwhelming for the little ones. So I was on the hunt for a story to gently introduce food allergies, which could benefit not only the food allergic child, but the classmates as well. Since, I couldn’t find exactly what I wanted to read to a younger audience, I decided to write it myself.

Besides writing a book, what are some ways that others can get involved with food allergy education?

There are opportunities at all levels! It starts by educating yourself and your family, next the classmates, friends, and peers of your children. Children make wonderful advocates. I think focusing education on not only children with food allergies, but their friends, is a great way to get involved and help keep everyone safe. I have had multiple opportunities to read “Mangos for Max” at different preschools and elementary schools. After I read the story, I have been able to engage in questions about the book, about allergies, and just interact with this young audience to help reiterate keeping everyone safe. I encourage all parents of children in preschool and elementary school to go in to the classroom and read a story about food allergies. I have had a very positive experience in educating this way.

Why did you decide to get involved with FARE in particular?

I have been a big fan and supporter of FARE. The vision of FARE is to make the world safe for people with food allergies. With a vision like this, it was a very easy decision for me to include FARE on a portion of my proceeds. This organization has done a wonderful job at educating the educators, providing resources, and funding research. I actually can’t think of a better organization to support!

What’s been the best part about publishing your book?

The best part about publishing my book is reading it to young children at the preschool and elementary school setting.  “Mangos for Max” has been a dream of mine. I wrote this story four years ago; it is finally a book and the adventures it has taken me on have been surreal. I have been able to read to preschoolers and talk with directors about food allergies and education. I feel so honored that I have had this opportunity to each others about food allergies.

Thank you, Jessica, for providing a new resource to parents, children, and teachers, to help educate children about food allergies!

If you would like to purchase “Mangos for Max,” visit Amazon: http://www.amazon.com/Mangos-Max-Dr-Jessica-St-Louis/dp/1477602070.

Food Allergy Bloggers Come Together in Las Vegas

Last week, FARE staff had the privilege to participate in the first ever Food Allergy Bloggers Conference (FABlogCon) and connect with dozens of food allergy bloggers, health care professionals and community members. FARE is a proud sponsor of this event, which received support through our community grants program.

The weekend brought together bloggers and other advocates from across the nation – some with food allergies, some with children who have food allergies, and some representing the celiac disease and food intolerance communities – for a weekend of learning, support and inspiration. Conference attendees discussed some of the major challenges facing the food allergy community today, shared personal experiences, and learned about important ways to advance the community’s messages about life-threatening food allergies. This remarkable group proved that although our community is spread across the country and diverse in many ways, we are all united by a common cause: to make the world a safer and better place for those living with food allergies.

FARE is also grateful to the bloggers who joined us at the FARE Walk for Food Allergy in Las Vegas. Their team raised $3,500 to support FARE’s mission!

Thank you to all of the organizers, sponsors and attendees for making this event possible, especially conference organizers Jenny Sprague (Multiple Food Allergy Help) and Homa Woodrum (Oh Mah Deehness!).

Just Released – National Guidelines for Managing Food Allergies in Schools

cdccoverToday marks a milestone for the food allergy community. The Centers for Disease Control and Prevention (CDC) has published “Voluntary Guidelines for Managing Food Allergies In Schools and Early Care and Education Programs” – the first comprehensive national guidelines for school food allergy management. Food Allergy Research & Education (FARE) collaborated with the CDC along with other groups on the development of these guidelines.

The CDC guidelines seek to protect the physical and emotional health of students with food allergies by providing practical information and strategies for schools to use while reinforcing federal laws and regulations. These guidelines can help schools and early childhood programs improve existing practices and implement policies that may help reduce allergic reactions, improve response to life-threatening reactions and ensure current policies are in line with laws that protect children with serious health issues.

Here’s how you can help spread the word that the CDC guidelines are now available:

  • Know the Facts: More than 15 percent of children with food allergies have had a reaction at school, and approximately 25 percent of epinephrine administrations in the school setting involved an individual whose allergy was previously undiagnosed.
  • Contact Your District and School Leaders: Reach out to your school board, superintendent, principal, and/or school health office to let them know that the guidelines are available at www.foodallergy.org/CDC. If your school district already has school food allergy management guidelines in place, ask your school officials to consider the CDC guidelines the next time changes are proposed.
  • Tell Your Friends: Let other families know that they can help increase awareness of the new CDC guidelines by notifying their district or school leaders.

With your help, we can continue to advance the safety and inclusion of students with food allergies at school. We appreciate your support and your help in spreading the word about the CDC guidelines in your local community. For more information, visit  www.foodallergy.org/CDC or http://www.cdc.gov/healthyyouth/foodallergies/.

Would you Rappel Down a Building for Food Allergies?

OE_logo_original [Converted]Two food allergy moms are doing just that as participants in one of a series of fundraisers called Over the Edge. Happening in four locations this fall, a group of adventurous souls will be rappelling down the side of a high-rise building, all to benefit FARE’s food allergy education, advocacy, awareness and research programs.

We’ll have events in Arlington, Va. on Nov. 16; Atlanta on Nov. 23; Tampa on Dec. 7; and Houston on Dec. 14.

We recently chatted with two moms who are bravely going Over the Edge for FARE, Mary Kirkman of Atlanta and Natasha Perkins of Vienna, Va. It only took a matter of days for the women’s friends and family to contribute enough donations to send them over the edge! Below is an excerpt from their interview, but you can read more about Mary and Natasha in the next issue of FARE’s quarterly newsletter, out next month.

How are you affected by food allergies?

maryMary: 
Our 8-year-old daughter, Olivia, was diagnosed just after her first birthday with multiple food allergies. We’ve been through four anaphylactic reactions in her short life. Food allergy awareness and education has become our passion. I’ve enjoyed chairing the FARE Walk for Food Allergy in Atlanta, GA, working with our school district to stock epinephrine and educating parents and children whenever possible. I know that our experience can help others.

natashaNatasha:  My 8-year-old daughter has multiple food allergies.  She was diagnosed as an infant.  As she has gotten older, her symptoms and reactions have become more severe.  She has had an anaphylactic reaction to milk.  She also has severe eczema that makes her miserable.  Managing her allergies is a daily, stressful and time-consuming effort.  We have to plan her meals and eliminate her exposures. Grocery shopping is very time-consuming since we have to read and re-read labels. It is challenging to just get a quick bite to eat since she cannot eat at many restaurants and we have to be very careful at others. Our food bill is much higher now as well, because the foods she can eat are more expensive.  Her social life is impacted because we cannot just send her with others to eat or stay overnight. She has to bring her own food to parties and events and many times she just doesn’t have the treats other kids do. Many of her friends’ parents are scared to have her over because they are scared of the epinephrine auto-injector that is her constant companion. Zoe handles the disappointments of not being able to share in a treat very well, but I can see that she is saddened and it breaks my heart.

How did you talk to others to gain support for your Over the Edge fundraising campaign?
Mary:  I went friend to friend and asked them to “send me over the edge.” Once I explain what that means exactly and that I’m doing it for Olivia they are extremely supportive and ask if they can come watch. Of course they also think it’s the craziest thing they’ve ever heard!

Natasha:  Zoe has lifelong allergies that require a significant amount of effort to manage.  She is on the list to participate in a clinical trial, however, such trials need to be funded.  FARE supports trials like this one.

How have your family and friends reacted when you have told them you’re rappelling down the side of a high-rise building?
Mary:  Everyone is VERY excited for me and can’t wait to come watch. However, most of them have told me that I’m completely crazy! Olivia can’t wait to watch me.

Natasha:  Most have joked that I have lost my mind. Others have said that a mother’s love knows no bounds. Most have thought it is really cool.

What would you say in encouragement to others considering Over the Edge?
Mary:  I would say – come on, it will be awesome!! It’s a once in a lifetime opportunity! Besides this is by far the easiest way to raise money for food allergy that I’ve ever come across!

Natasha:  Just go for it. Twenty minutes of facing a fear is nothing compared to the constant fear that people with food allergies and the families have. What Zoe addresses daily is much more challenging.

You can sign up to go over the edge by visiting www.overtheedgefare.org. If you’re not a thrill-seeker yourself, challenge a friend, family member

Tips for Trick-or-Treating Safely on Halloween

halloweenblogEvery year, millions of children look forward to Halloween – planning their costumes and anticipating loads of candy. But kids with food allergies – and their parents — must approach Halloween with caution (and diligent label-reading!).

Many candies are off limits for kids with food allergies, either because their allergen is an included ingredient or because of the risk of cross-contact.

The good news is that Halloween can be just as much fun for kids with food allergies. Here are some tips for a safe trick-or-treating experience:

  • Stock up on safe treats or inexpensive trinkets/toys to trade for any unsafe candies your child might receive while trick-or-treating. You can also use sorting through your child’s candy as an opportunity to teach him or her about hidden allergens and reading labels.
  • Enforce a “no eating while trick-or-treating” rule, so that you have time to review all food labels.
  • Avoid candy and treats that do not have an ingredient label.
  • Always have an epinephrine auto-injector available, if prescribed.
  • Keep in mind that the mini-size, fun-size, or bite-size version of candy may contain different ingredients than their full-size counterparts. Make no assumptions, and read all labels carefully.
  • Keep the emphasis on the fun, rather than the candy.
  • Consider starting a tradition by allowing their kids to leave their unsafe candies out for the “Good Witch” to collect and leave behind small gifts and safe treats.
  • Consider making small and safe “goody bags” for neighbors to give to your child. Deliver the bags in advance and describe your child’s costume to your neighbors. Encourage your child to trick-or-treat at the houses in which you’ve delivered the bags.
  • Consider skipping trick-or-treating, and have a Halloween party instead, featuring safe and delicious treats. Or, skip the treats altogether by replacing them with other fun Halloween toys, games, or party favors.
  • Remember that a candy that has been safe for your child in the past may now have different ingredients. Read the label, every time.

We wish you a happy and safe Halloween!

Important Notice Regarding Food Allergies and the Federal Government Shutdown

Since the shutdown of the federal government earlier this week, FARE has been investigating the ways in which the shutdown may impact government services or initiatives related to food allergies. While much is uncertain during this time, we want to provide the community with the information we have gathered thus far, and we will continue to inform you of any new developments. Please be advised of the following important notices regarding federal government shutdown:

USDA and FDA Food Recalls Due to Undeclared Allergens
Updated 10/10/2013
FARE has reached out to multiple contacts at both the Food and Drug Administration (FDA) and U.S. Department of Agriculture (USDA) to determine if their food recalls and recall notification systems are being affected by the shutdown. These undeclared allergen recall notifications provide potentially life-saving information to our community.

The information we have at this time indicates that many of the staff who are responsible for processing and distributing recall notices have been furloughed. Recalls are delayed in distribution, and are being released in a limited capacity.

FARE has reached out to more than a dozen major food industry organizations and manufacturers asking them to contact FARE directly with any allergy recall alerts so that we can continue our service of notifying the community via email and social media.

Access to USDA Medical Statement Form
Parents requesting special meals, accommodations and milk substitutions for school lunches are required to fill out a form and submit it to a school nurse or other administrative staff. This form is typically accessed through the USDA’s website, which is currently inaccessible. Parents or schools in need of this form can access it here: Special Dietary Needs Request.

Supplemental Nutrition Program for Women, Infants and Children (WIC)
For families relying on services from WIC for specialty formula and foods, it is important to know that federal funds for this program have been halted due to the shutdown. Most states are continuing to fund current WIC participants and honor WIC vouchers; however, some states indicate they only have funds to continue doing this for a short period of time, so recipients may soon stop receiving benefits. If you are a current WIC participant, please reach out to your state WIC program.

Status of S. 1503 – The School Access to Emergency Epinephrine Act
The School Access to Emergency Epinephrine Act, which encourages states to adopt laws requiring schools to have “stock” epinephrine auto-injectors, was due for consideration before the Senate Health, Education, Labor  & Pensions Committee on October 2. However, because of reduced staffing the review was postponed until further notice. Please continue to write to your Senators to encourage them to co-sponsor the bill by visiting the FARE Action Center.

Government-Funded Clinical Trials
Most FARE-funded clinical trials do not receive government funding, so they are unaffected by the shutdown. Existing trials that are funded by the National Institutes of Health, including studies that are co-funded by FARE, are ongoing. However, these trials are limited in their ability to recruit new patients.

FARE Kids Who Care: Aron Rabin

AronandGoldaSix-year-old Aron Rabin approached his mom one day with an idea for a way to raise money to “help doctors find a cure for food allergies.” Aron, who is allergic to tree nuts and fish, wanted to make awareness bracelets to sell to friends and family. What started as a simple idea has grown into a hugely successful fundraiser! Aron has raised $1,115 so far selling bracelets, and has helped spread awareness and educate others in the process. We asked Aron a few questions about himself and his fundraiser:

1. What are your food allergies? What’s it like having food allergies?
I am allergic to tree nuts and fish. I feel alone sometimes. Some people have lunches with nuts and fish in it and I can’t sit with them. It makes me feel kind of sad that I can’t be with my friends at lunch.

2. Tell us about how you have been fundraising for FARE.
My mom and I made bracelets to sell to our friends and family to raise money. We made teal, black, and glow in the dark options.

3. Why did you want to do it? Why was it important to you?
I wanted to raise money to give to doctors so they could make a medicine or liquid that would make my allergies go away. I feel it’s very important so I don’t feel alone.

bracelets4. How can you be a good friend to someone with food allergies?
The truth is that some people are different than others but you can still be their friend and treat them nicely!

5. What advice would you give a kid or a friend who was just diagnosed with food allergies?
I would tell them to always check with people who serve them food to make sure it’s safe. I would also tell them to read labels.

Thank you to Aron and the Rabin family for your support and for being an inspiration to other kids!