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. We also have handouts for School Boards and School District Administrators available on our website.
  • 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?

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!