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.

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.

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.

Back-to-School Twitter Party

new_twitter_bird_vector_by_eagl0r-d2yth6gEach school year brings a fresh start for students – new teachers, friends, classes, or schools. It also brings a checklist of to-dos for parents of kids with food allergies to ensure that they are set up to have a safe, fun and successful year.

To kick off the Back to School season, we’ll be hosting a Twitter chat with members of our staff, partner organizations, bloggers, and other parents or individuals with food allergies. With many schools in session already, we’ll be discussing fun topics such as recipes for after-school snacks, tips for packing lunches, and ways to celebrate without food.

Details

Date: Friday, August 30
Time: 1pm EST
Hashtag: #AllergyChat
Moderator: @FoodAllergy

How to Participate

  • Be sure you are following @FoodAllergy on Twitter
  • Join the Twitter chat on August 30 at 1pm, EST by following @FoodAllergy and #AllergyChat
  • Tweet your advice to other parents by answering questions sent out from FARE @FoodAllergy

We hope you’ll join us!

Ask the Expert: What concerns should I have about genetically modified foods and food allergies?

Scott Sicherer goes with Ask the Expert

Scott H. Sicherer, M.D., is a professor of pediatrics, Jaffe Food Allergy Institute, Mount Sinai School of Medicine, NY, and is a member of FARE’s Medical Advisory Board.

Scott H. Sicherer, M.D., responds:

Genetically modified (“GM”) foods are those produced from GM organisms (“GMOs”), which are typically crops, including fruits, vegetables and grains. Prior to modern biologic techniques, farmers might have selected and bred better tasting or more hearty strains of their crops, a form of genetic engineering.
In the past decades, it has become possible to insert genes that can, for example, make a plant resistant to specific diseases or insects, make a plant easier to grow with less chemical weed killers, or improve how it ripens.

Arguments for pursuing GM foods include the need to keep up with worldwide food production needs; to reduce costs, pollution, and use of chemicals to manage crops; and to develop foods with better nutrients. About 85 to 90 percent of corn and soy produced in the United States is GM.

The general safety of GM foods is a topic of strong interest in the international
public health community. There is broad scientific consensus that GM foods on
the market pose no greater risk than their normal counterparts, although there are skeptics and critics. Nonetheless, there are no documented ill effects. Regulatory and scientific agencies have developed international guidelines to address safety, with attention to nutrition, toxicity and a variety of concerns in addition to allergy.

With regard to allergy, the potential concerns include: transfer of a known
allergen, creation of a new allergen, or having a plant produce more of a protein
that is or may be an allergen. The Codex Alimentarius Commission of the World
Health Organization has recommended a “weight-of-evidence” approach to evaluate GM foods for allergy risks, meaning that multiple forms of safety assessment are undertaken and considered. These include studies to address: Has the protein introduced caused allergy or illness when previously eaten? Does the protein resemble the many well-characterized allergenic proteins? Does it behave like typical allergens, for example with resistance to digestion? Does it alter the amount of proteins, including any allergens, the plant was making?

Although there is currently no evidence that GM foods are more allergenic or have somehow contributed to the apparent increase in food allergies, there are no comprehensive studies on this topic. Most experts do not include GM foods high on their “working list” of reasons for the increase in food allergy because there is little scientific reason to suspect a connection, and many other theories are more compelling. However, attention to the risk of allergy is an ongoing concern.

Additional crops and also GM animals are under study. Experiments are
also underway to use genetic engineering to develop less allergenic forms of common food allergens. It remains a key focus to ensure the safety of these foods from an allergic point of view in the future, but the products currently on the market have been widely studied and appear to be safe.

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

What Every Parent Needs to Know About Section 504 Plans

busA food allergy may be considered a disability under federal laws, such as Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA).

FARE recommends that parents of children with a food allergy create, in collaboration with their school, a written food allergy management plan. One type of plan is called a 504 Plan.

What is a 504 plan?
Section 504 is part of the Rehabilitation Act of 1973 that was designed to protect
the rights of individuals with physical or mental impairments in programs that receive federal assistance. This includes public or private schools that receive federal funding. Parents of children with food allergies may refer to a “504 Plan” as the accommodation plan that allows safe and inclusive access to activities at school.

What are some examples of accommodations?
Examples of common accommodations include:

  • Allergens are restricted from the classroom
  • Teacher and bus driver are trained to recognize and treat a severe allergic reaction (anaphylaxis)
  • Food is not used for rewards, crafts or in treat bags
  • Birthdays are celebrated with nonedible treats
  • Hands are washed (or hand wipes are used) before and after meals and snacks

Does a 504 plan mean my child is disabled? I don’t want my child to be labeled.
“Disability” is a loaded term. Remember, it is only a word. Dis-able means unable and the truth is that many of our children are unable to eat or, in some cases, come into contact with food or food residue without risk of a life-threatening reaction.

Is an Individual Health Care Plan (IHCP or IHP) a substitute for a 504 plan?
No. If a student has a health or mental health impairment that is considered a disability and needs aids or services (for example: special seating at lunch, a teacher who is trained to recognize anaphylaxis), then the child should be evaluated for a 504 Plan.

What about extracurricular activities at school? Does Section 504 apply?
Yes. Section 504 (Subpart D) ensures that students with disabilities have an
equal opportunity to participate in extracurricular activities. Section 504 regulations (34 CFR 104.37(a)(1) require access to extracurricular activities in “such a manner as is necessary to afford students with a disability an equal opportunity for participation in such services and activities.”

My son’s school celebrates with food almost every week. They asked me to send in a “safe treat box” so I did. my son came home many times this year upset about being excluded from all of the fun ice cream, pizza parties and cupcakes. By the end of the year, he would not eat from his ‘safe treat box’ at all. So he sat there eating nothing while the other kids celebrated. What can help?

In a private setting, it’s appropriate to take on most of the responsibility for your child. For example, at your neighbor’s barbeque, you may need to bring your child’s entire meal. However, at school, your child should not be excluded from activities because of his food allergies. Your child is entitled to a free appropriate public education (FAPE). The best way to handle these issues is before they arise by agreeing upon what is needed for your child to participate and documenting it in a 504 Plan. When negotiating these plans, the team will decide on how birthdays, holidays and other occasions will be celebrated and how your son can access these activities safely in the least restrictive environment. Many schools (due to wellness, obesity, food allergies, etc.) are moving to food-free celebrations using games and rewards such as extra recess or no-homework passes.

We are all hoping for a cure for food allergies, but until that day comes, our children need accommodations at schools, at restaurants, on airplanes and beyond. Each time we take the time to learn and educate others, we make our dream of a safe and accessible world closer to reality.

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