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!

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!

What to Expect at a FARE Walk for Food Allergy

The FARE Walk for Food Allergy is a family-friendly event that takes place in more than 60 communities nationwide, and right now it’s walk season! Thousands of walkers across the country are fundraising, recruiting team members, and preparing for the event. Whether you’re a first-time walker or a veteran, we wanted to provide you with some useful information based on questions we frequently receive. Visit www.foodallergywalk.org for more information, to register, or to donate to an individual or team!

philadelphia

How long of a distance is the walk?
Our walks range from two to three miles, with some walks providing a 5k run or walk/run option.

Who makes the walk program possible?

FARE is fortunate to have many generous sponsors at our walks. The support they provide through the walks is instrumental in funding the national education, awareness, advocacy and research initiatives FARE undertakes in support of the entire food allergy community. Our walks are also made possible through the efforts of hundreds of volunteers – from the walk chairs who organize the events, to supporters who help the walks to run smoothly. Thank you!

What kind of activities will there be at the walk?

In addition to the walk itself, there are a variety of fun activities at each Walk for children and adults. Many walks feature face painting, moon bounces, rock-climbing walls, carnival games, crafts, and prize drawings. A deejay, clowns, musicians, or other performers are also in attendance to provide entertainment throughout the day. There are also a variety of local and national vendors who are on site at each walk, including allergists’ offices, book authors, and food companies.

Will there be food samples or food served at the event?

All of our walks have free samples available, provided by our sponsors or local businesses. We hear from many of the individuals and families who participate in the walks each year that they appreciate these samples because it gives them the opportunity to learn about new or different allergy-friendly food products that they may be able to incorporate into their lifestyles.

What type of safety precautions or policies do you have in place regarding food?

We take a number of safety precautions to help everyone have as safe and enjoyable an experience as possible. We do our very best to share and enforce these policies with walk participants both in advance and on-site, making the information available multiple times through a variety of channels both before and at the event.

FARE Walk Policy Regarding Food at the Walks

In advance of each walk:

  • Walk chairs and staff members discuss all food samples with sponsors prior to the walk and sponsors must clearly list and label the ingredients of their products.
  • A statement is posted on each walk website and an email is sent to all registered walkers in advance of the event reminding everyone that there will be samples at the event and that they should read labels and refrain from opening samples at the walk.
  • A message is sent to walk volunteers noting that they should not bring food to the walk site , and that they should be aware of any foods they consume beforehand and properly wash their hands before arriving at the walk.

On-site at the walk:

  • There is signage on each food table that reminds everyone to read the ingredients on all food product labels.
  • At least three announcements are made during each walk reminding everyone to read labels and to refrain from opening samples at the walk.
  • Sponsors who arrive with food that was not reported to FARE in advance are asked to remove it from the site. If it is learned after the fact that a sponsor provided food that was not reported in advance, FARE staff will follow up with the sponsor to remind them of our policies.

If you have questions or want to get involved in a walk in your community, please visit www.foodallergywalk.org for contact and event-specific information.

FARE Food Allergy Fundraising Champion: David Stotarczyk

friedelIf there are 6 million kids with food allergies in the U.S., that means there are also millions of “food allergy grandpas.” Jordan Friedel’s grandfather David recently showed us how, with simple and earnest outreach, a community can pull together to support a worthy cause.

David is the president of his local Communication Workers Association union in Detroit. While his fellow union members know him as typically being “all business,” at a recent meeting he stood at the podium in the name of food allergy awareness, wearing his “No Nuts for Jordan” t-shirt instead of his usual CWA Local 4050 shirt (“No Nuts for Jordan” is the Friedel family’s team name for the FARE Walk in Columbus, OH). He shared the story of a recent tragedy that deeply touched the food allergy community, the death of 13-year-old Natalie Giorgi, and then told them all about his own granddaughter Jordan who lives every day with life-threatening nut allergies. He explained that he was walking in the FARE Walk to help raise money to find a cure.

friedel2He held up an envelope and said, “If each of you could spare one dollar, together we could add $150 to this important cause.” To his surprise, every member of the union lined up to donate and he ended up collecting $274! With the love and support of his family members, Jordan’s team was the top fundraiser in Columbus, contributing more than $2,700!

To register for a walk in your area, visit www.foodallergywalk.org.

Teen Summit – A Life-Changing Experience

Teen_Summit logo webHave you registered for FARE’s Eighth Annual Teen Summit? If you have a pre-teen or teen between the ages of 11 and 22, you won’t want to miss it. This year’s Teen Summit will be held Nov. 15-17 at the Hyatt Regency Washington on Capitol Hill. Teen Advisory Group member Elisa shares what FARE’s Teen Summit means to her:

I first went to Teen Summit two years ago when I was entering ninth grade. Honestly, it changed my life; I met so many kids who were just like me. I always felt alone when it came to my food allergies and it was refreshing getting to be around so many amazing people who knew exactly what I go through every day. I made lifelong friends at Teen Summit and I couldn’t be more grateful that I went and have become an active member in FARE. Food allergies are a huge part of me and FARE and the Teen Summit have helped me become more confident regarding my allergies.

To learn more or to register, visit www.foodallergy.org/teensummit.

MedicAlert “MyVoice” Program and Giveaway

medicWith food allergies, you can’t predict where you’ll be or who you’ll be with should you have a reaction. However, you can take a few daily precautions to give you the peace of mind that you’re prepared. Always carrying epinephrine and having a Food Allergy & Anaphylaxis Emergency Care Plan are key, but you should also wear medical identification jewelry at all times. Just like you put on your watch or brush your teeth in the morning, putting on your ID becomes a part of your routine. It’s a simple habit that could ultimately save your life.

Communicating the severity of a medical emergency quickly is critical, which is why we have partnered with the MedicAlert Foundation to provide the “MyVoice” program, designed to help protect individuals with food allergies with live-saving services. The MedicAlert Foundation stores an individual’s medical information and links it to his or her personalized medical identifications. Additionally, a MyVoice MedicAlert membership provides family notification service in the event of an emergency, 24 hours a day.

We’re giving away a free MyVoice membership! MedicAlert has provided one free medical ID bracelet and membership. Click here for a few easy ways to submit an entry into the raffle.

Enter the giveaway!

We encourage you to join MedicAlert to fully protect yourself or your child. Even if you don’t win the giveaway, the MyVoice program through FARE provides a 10 percent discount on MedicAlert memberships for both adults and children. The Kid Smart membership comes with a free basic ID, or a $10 credit toward an upgraded medical ID product, while the adult membership comes with a $10 credit toward any medical ID product.

Who is Likely to Outgrow a Food Allergy?

“Will my child outgrow the allergy—and when?” This is typically one of the first questions parents ask when a child is diagnosed with a food allergy. Two recent studies shed light on this important issue.

researchNational Survey of U.S. Children
Few large studies have explored which factors could help predict whether or not a child will achieve tolerance—that is, outgrow an allergy. Between June 2009 and February 2010, Dr. Ruchi Gupta and colleagues (Ann & Robert H. Lurie Children’s Hospital, Chicago) surveyed the families of 40,104 children nationwide—the largest study of this kind to date. The researchers analyzed data for nine common food allergies: milk, peanut, shellfish, tree nuts, egg, fin fish, wheat, soy, and sesame.

The study, published online in the Annals of Allergy, Asthma and Clinical Immunology in July 2013, found that 3,188 children surveyed currently had a food allergy, while 1,245 had outgrown one. Key findings of this FARE-funded study include:

  • A little more than a quarter of the children—26.6%—outgrew their allergies, at an average age of 5.4 years old.
  • Children who were allergic to milk, egg, or soy were most likely to outgrow their allergies. The likelihood of outgrowing shellfish, tree nut, and peanut allergies was significantly lower.
  • The earlier a child’s first reaction, the more likely that child was to outgrow the allergy.

Other factors that contributed to outgrowing an allergy included having a history of only mild to moderate reactions, being allergic to only one food, and having eczema as the only symptom. Conversely, children with severe symptoms (trouble breathing, swelling, and anaphylaxis) and multiple food allergies were less likely to achieve tolerance.

  • Black children were less likely to outgrow their allergy than white children.
  • Boys were more likely to outgrow their allergy than girls.

Dr. Gupta and her team conclude that, while more studies over longer periods of
time are needed to confirm these findings, this data can improve the management of food allergies and aid in counseling food allergy families.

Outgrowing Peanut Allergy
Peanut allergy is one of the most common food allergies among children. In the United States, the number of children with peanut allergy more than tripled between 1997 and 2008. This allergy tends to be lifelong; only about 20 percent of children are fortunate enough to outgrow it. A Canadian research team reports that children are most likely to outgrow their peanut allergy by age six. After age 10, the chance of spontaneous resolution (i.e., of outgrowing the allergy) is much lower, according to this study, which was published online in the Journal of Allergy and Clinical Immunology: In Practice on June 27.

Between 1998 and 2011, the researchers, led by Dr. Anne Des Roches (Centre
Hospitalier Universitaire Sainte-Justine, Montreal), followed 202 children with peanut allergy from early childhood (18 months or younger) to adolescence. To confirm their diagnosis and monitor their allergies, the children periodically received skin prick tests, along with blood tests, which measured the amount of peanut IgE in their blood. (IgE is the antibody that triggers the symptoms of a food allergy.)

Starting at age five, children whose blood tests showed a comparatively low level of peanut IgE also had the opportunity to undergo food challenges, the most accurate test available.

At the end of the study, 51 of the original 202 participants—just over 25 percent—had outgrown their allergy. Further, 80 percent of the children in this group were allergy-free before age eight. Tests also showed that these children had low levels of peanut IgE in their blood. In children who remained allergic, the amount of peanut IgE in the blood increased over the years.

The Canadian team concluded that their findings are consistent with a previous study by researchers in Australia, which followed 267 children over five years. They recommend additional studies to examine “whether spontaneous resolution may still occur in this population in late adolescence or early adulthood.”

The studies discussed here help us understand the nature and progression of food allergies. For more information about progress in the field of food allergy, please visit www.foodallergy.org/research.

This article was originally published in the Summer 2013 issue of FARE’s Food Allergy News. Read more of the newsletter here.