Family Food Allergy Foundation Memorializes Elijah-Alavi

Elijah-Alavi

The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis.    Read the article here.

Food Allergy & Anaphylaxis Awareness Day in Albany

We’re back in the saddle again for a Food Allergy and Anaphylaxis Awareness Day in Albany, scheduled for May 4. We plan to show our support for legislation that would authorize, but not mandate, public venues such as restaurants, youth organizations, sports leagues, theme parks, sport arenas, day care and educational facilities to stock and administer epinephrine in an emergency. This important legislation is being reintroduced by our champions, Senator Kemp Hannon in the State Senate and Tom Abinanti in the Assembly. If you can’t join us in Albany, it would be great if you could sign our petition (details below) or send a brief email to your legislator!

Kemp Hannon
NY State Senator Kemp Hannon
Tom Abinanti
NY State Assemblyman Tom Abinanti

Food Allergy & Anaphylaxis Awareness Day in Albany

By Jon Terry
March 12th, 2016

Greetings from Jon Terry, the founder of the Allergy Advocacy Association. Concerning anaphylaxis, life-threatening allergies and epinephrine, important legislation is again being proposed during the current session of the New York State legislature in Albany.

The Emergency Allergy Treatment Act S06800/A09357 has been reintroduced into the Senate by Senator Kemp Hannon (R) Senate District 6 and in the Assembly by Assemblyman Thomas J. Abinanti (D) Assembly District 92. Our association firmly supports the efforts of Senator Hannon and Assemblyman Abinanti.

This legislation would authorize, but not mandate, public venues such as restaurants, youth organizations, sports leagues, theme parks, sport arenas, day care and educational facilities to stock and administer the Epinephrine Auto-Injector device (EAI) in an emergency to individuals who appear to experience anaphylactic symptoms. Many of these public venues already have life-saving devices such as the Automatic Electronic Defibrillator (AED) readily available. This legislation would not require any entity to stock epinephrine auto-injectors, but would simply permit it provided all the requirements of the law, such as training, have been met.

There are statistics that show the importance of immediate administration of epinephrine when symptoms of anaphylaxis occur after eating certain foods, taking medications or being stung by an insect. Unfortunately, there are also statistics of people who lost their lives because epinephrine was not available.

Mylan Specialty sponsors an EpiPen4Schools program that provides free Epi-PensTM for qualifying schools throughout the U.S. Their annual survey found 919 episodes of anaphylaxis in the 2013-2014 school year alone.

Most significantly, in 22% of cases anaphylaxis occurred in students or staff members with no known allergies, and they would not have had a prescribed Epinephrine Auto-Injector device (EAI) on hand (For more details please see the March e-newsletter on our Web site). Continuing improvement of access to epinephrine beyond the boundaries of our school districts is the best way to save lives when anaphylaxis occurs.

These auto-injectors will save lives, just as the AED devices that are placed in public facilities to treat heart attacks have saved lives. Placement of these devices would be especially appropriate in outdoor venues and camps where bees and other stinging insects are likely to be present, or in locations serving food where a severe allergic reaction to a food could occur. 

  • According to Food Allergy Research and Education (FARE):
  • About 15 million Americans have food allergies.
  • One in every 13 children has food allergies, about two in every classroom.
  • Food allergies in children increased nearly 50 percent between 1997 and 2011, accor ding to the Centers for Disease Control and Prevention.
  • Eight foods account for 90 percent of all food-allergic reactions: milk, eggs, pean uts, tree nuts, wheat, soy, fish and shellfish.
  • Every three minutes, a food allergy reaction sends someone to the emergency departm ent, more than 200,000 emergency department visits per year.
  • Children’s food allergies cost a collective $25 billion per year.

19 states already have laws similar to the Emergency Allergy Treatment Act. Oregon, Florida and Rhode Island passed legislation in 2013 and 2014. In 2015, legislatures in 16 more states (Arkansas, Colorado, Georgia, Indiana, Iowa, Kentucky, Maine, Michigan, Minnesota, Nevada, New Jersey, North Carolina, Oklahoma, Utah, Wisconsin and West Virginia) passed legislation.

On Wednesday, May 4th the Allergy Advocacy Association will participate in the Food Allergy & Anaphylaxis Awareness Day in Albany. We actively support any reasonable legislation that improves access to epinephrine. From 9am to 4pm we will be exhibiting at the concourse entrance to the Legislative Office Building in the New York State capitol. Please join our advocacy efforts by attending or by signing our petition supporting EATA on our Web site or on Change.org.

The vision of the Allergy Advocacy Association is a clear and direct one. "Not another life lost to anaphylaxis - Not another life lost to ANY life-threatening allergies!" I’ll be seeing you soon in Albany! Best wishes and many thanks!

© Copyright Allergy Advocacy Association.

Introducing A.D.A.M.M!

For those who don’t have asthma, it is surprising to hear that many sufferers (especially teens) do not always recognize symptoms in order to know what to report to their doctors, resulting in under treatment. We are proud to report a professor of Nursing at the University of Rochester designed a device that can detect sounds such as wheezing and coughing that are then transmitted to an iPod.

Dr. HyeKyun Rhee
Dr. HyeKyun Rhee
Device for Monitoring Asthma
Automated Device for Asthma Monitoring and Management
Photo by Ethan Miller/Getty Images

U of R Prof Creates Innovative Asthma Monitoring and Management Device

By Kristen Stewart
March 10th, 2016

Anyone with asthma knows how difficult it can be to control. This can be especially true for teenagers.

Dr. Hyekyun Rhee, an Associate Professor at the University of Rochester School of Nursing and longtime asthma researcher, observed this firsthand when interacting with younger people. “In my previous studies about asthma self-management when I’ve spoken with teens, I realize they have a lot of symptoms but they don’t necessarily perceive those symptoms,” she said. “Some kids are wheezing when they talk to me and I ask if they are OK and they say, ‘Oh, I’m fine, what’s the problem?’ They didn’t even realize they had symptoms!”

Continue Reading

"Read 'em and Weep?"

"Read 'em and Weep?"

In an important study, Dr. Ruchi Gupta, an associate professor of pediatrics at Northwestern University’s Feinberg School of Medicine, showed that parents are relying far too much on food labels when choosing items that are safe for their children with allergies. She reminds us that precautionary allergen labeling such as “may contain” is voluntary, so unless it says specifically “no nuts” or “no specific allergens,” it doesn’t necessarily mean it’s safe. Manufacturers also use a variety of different words used as warnings, causing further confusion. Until there are guidelines developed, the best course of action is to avoid products with any precautionary labels.

Man Reading Label In Grocery Store
Differences in wording on precautionary allergy labels do not mean a product is safer than another. Photo: Thinkstock

Precautionary Allergy Labels Cause Widespread Confusion, Researchers Find

By: Ishani Nath
March 8th, 2016

Precautionary allergy labels are widely misunderstood and causing confusion, which in turn is leading to a lack of caution among consumers who live with food allergies, according to a recent study.

Researchers surveyed more than 6,600 food-allergic consumers and caregivers in the U.S. and Canada, finding that 12 to 40 percent of the respondents purchased food with precautionary labels such as “may contain peanut” or “manufactured in a facility that processes milk.”

“Parents are making their own risk assessments on which label is safe for their child, which they shouldn’t have to do,” says study author Dr. Ruchi Gupta, an associate professor of pediatrics at Northwestern University’s Feinberg School of Medicine. “Parents need to know that precautionary allergen labeling like “may contain” is voluntary, so unless it says specifically “no nuts” or “no specific allergens,” it doesn’t necessarily mean it’s safe.”

The Food and Drug Administration requires manufacturers to clearly indicate if major allergens are ingredients of a product. But there are no legal guidelines on how companies should identify products that may have come into contact with food allergens during the manufacturing process. As a result, the wording and use of these precautionary labels is entirely up to individual manufacturers.

The survey results, presented at the AAAAI allergists’ conference on March 5, reveal that: 40 percent of consumers avoiding one or more allergens bought foods “manufactured in a facility that also processes allergens,” but only 12 percent bought foods with a “may contain” label. Beyond buying habits, the researchers also found a lack of awareness of labeling rules: 45 percent of respondents didn’t know that precautionary warnings are not required by law.

Purchasing Habits By Label Wording Chart

And the risks those findings present are real: A 2013 study tested 186 products with precautionary peanut labels and found 16 (just under 9 percent) contained the allergen. As well, a 2009 audit of nearly 100 U.S. supermarkets found that half of all chocolate, candy, and cookie products had precautionary labels – worded in 25 different ways.

The consequences of allergic consumers ignoring such labels have recently proved tragic. Bruce Kelly, a 22-year-old Minnesota man with a peanut allergy, died of anaphylaxis in January after eating chocolate candy with a label that said it had been made in a plant that also processed peanuts.

There are too many labels, and too many different types of wording,” says study co-author Dr. Susan Waserman, a professor of medicine in the division of allergy and immunology at McMaster University in Canada. “Patients assume that differences in wording imply a lower level of risk, which they don’t.”

Gupta and Waserman would like to see precautionary allergy labels reduced to one or two possible phrases with clear definitions. For instance, Gupta says if a “may contain” label meant that the food might have up to 100 milligrams of an allergen, then patients could work with their doctors to find out just how much of their allergen may be safe to consume and purchase foods accordingly. The study, published in the Journal of Allergy and Clinical Immunology, says that research is “underway to develop thresholds” for such labels.

In the meantime, the researchers advise patients to avoid products with precautionary labels. “It still seems to be the best way to maximize their safety,” says Waserman. The consumer surveys were conducted by FARE (Food Allergy Research and Education) and Food Allergy Canada.

Updated! Allergy-Friendly Easter Candy Guide for 2016

Updated! Allergy-Friendly Easter Candy Guide for 2016

TruJoy Sweets and Surf Sweets sponsor a complete list of Easter themed candy that is organized by the top 8 allergens: milk, tree nuts, eggs, peanuts, wheat, fish, soy and shellfish. The list also points out those treats that are organic, kosher and vegan. The Easter bunny can now deliver the right candy to the right person, worry-free!

Kids With Food Allergies Logo

Here it is - your 2016 Easter candy list for food allergy-friendly sweets! If you are filling baskets for your little ones, use this list as a shopping guide. Please remember to read all labels and make sure the product is right for your family.

This year's guide is made possible by TruJoy Sweets and Surf Sweets.

New this Easter:

TruJoy Sweets' organic bunny lollipops in three fun flavors - lemon, watermelon and strawberry. They also make fruit chews and Choco Chews. They are also USDA Organic certified and NonGMO Project verified, vegan and kosher. 

Surf Sweets features organically sweetened gummies with fresh fruit flavor. Check out fruit rings and jelly beans (including a Spring Mix). Vegan varieties available. 

Learn more about Surf Sweets [ad]

Read on for more choices, including new additions to this year's list. We've organized the list by allergen. Click on the category you need. 

FREE OF TOP 8 ALLERGENS (MILK, EGG, SOY, PEANUT, TREE NUTS, WHEAT, FISH, SHELLFISH)

Amore di Mona Chocolates: Non-GMO European chocolate and caramels free of dairy, egg, soy, gluten, tree nuts and peanuts. Varieties include cherries, currants, cranberries and coffee beans. Bulk chocolate and gift boxes. (FAQ)

Amanda's Own: Chocolate bunnies, candies, lollipops, jelly beans. Free of milk, peanut, tree nut, egg, gluten, sesame, and corn (except for jelly beans). The company's Sunflower Cups continue to have a warning label for possible traces of soy. When the current supply of SunButter is finished, they will clean their facility to remove any traces of the old product. (FAQ)

Enjoy Life Foods: Baking chocolate (mini chips, Mega Chunks, dark chocolate chips), boomCHOCOboom chocolate bars in dark chocolate, rice milk chocolate and rice milk crunch. (FAQ)

Just Born/Peeps: Peeps Bunnies, Peeps Chicks, Mike & Ikes. Some products may be free of top 8 allergens. Easter Peeps come in many flavors and some are exclusive to certain retail stores. Check labels for updated information. The company labels for any potential cross contact on original packaging. (FAQ)

Natural Candy Store: Online retailer for bunnies, jelly beans, chocolate for Easter eggs, baskets and baking decorations. Use the advanced search to find multiple top 8, corn and artificial dye-free options sourced from other companies. (FAQ)

No Cow Chocolate: (NEW) Bunnies, eggs and more. The company says all of their products are made in a dedicated facility free of dairy, gluten, soy, peanuts, tree nuts and eggs. (FAQ)

PASCHA: Chocolate bars, mini-bars and baking chips.  Fair trade, top 8-free and organic. (FAQ)

Righteously Raw Chocolate:  Chocolate bars and other treats. Available in variety packs, combo packs and gift baskets. Top 8-free and corn-free (contains coconut). Organic and non-GMO. (FAQ)

Spangler: Dum Dums Lollipops, Dum Dums Gummies, Saf-T-Pops, Circus Peanuts. Free of top 8 allergens, but most may have traces of soy oil. Spangler candies may be rebagged by other retailers; check the package to see if the product came from a Spangler facility. (FAQ)

St. Clairs Organics: Mints and fruit tarts. Free of top 8 allergens and corn. (FAQ)

Surf Sweets: Organically sweetened gummies (vegan varieties available), fruit rings and jelly beans (including a Spring Mix). Free of top 8 allergens, sesame, sulfites and artificial dyes. Made in cornstarch molds, may contain traces of corn. (FAQ)

YumEarth: Gluten-free licorice as well as sour beans, lollipops, gummies, candy drops, fruit snacks. The licorice is not free of wheat. The glucose syrup is derived from wheat that is processed to allow it to meet FDA gluten-free standards. The facilities that make the other candies are free of the top 8 allergens and sesame. Candy Drops are corn-free. (FAQ)

PEANUT-FREE AND TREE NUT-FREE

These items may contain coconut, which many people allergic to tree nuts can eat safely. Check with your allergist as to what is best for your child.

Amanda's Own: Chocolate bunnies, candies, lollipops, jelly beans. Free of milk, peanut, tree nut, egg, gluten, sesame, and corn (except for jelly beans). The company's Sunflower Cups continue to have a warning label for possible traces of soy. When the current supply of SunButter is finished, they will clean their facility to remove any traces of the old product. (FAQ)

Divvies: Chocolate bunnies, gummies, jelly beans, baking chips. Free of peanut, tree nuts, milk, egg and sesame. Some products may be free of additional allergens. (FAQ)

Dove Chocolate: Some chocolate bars free of peanuts and tree nuts. Verify the label with the company, especially on bunnies. (FAQ)

Gimbals: Jelly beans, fruit chews and more. Free of milk, egg, gluten, peanut, tree nuts and soy. (FAQ)

Goetze’s Candy(NEW) Caramel-wrapped cream candies made by the same company since 1895. Caramel Creams and Cow Tales are made in a dedicated, nut-free facility. (FAQ)

GoOrganic Candy and Hillside Sweets: Flavored candy chews and hard candy free of gluten, peanuts, tree nuts, egg, milk and soy. Processed on the same equipment as milk and soy. (FAQ)

Hershey's: Some chocolate candies free of peanuts and tree nuts. The company labels for top 8 allergens and cross contact. Hershey's does sell bunnies; contact the company directly to find out if they are peanut/tree nut-free. (FAQ)

Huey's Nut Free Chocolate: (NEW) Chocolate bunnies, cream eggs, lollipops and more. Free of peanut, tree nut, sesame and coconut. (FAQ)

Jelly Belly: The plants that make Jelly Belly jelly beans no longer process peanut. They still process almonds, walnuts, cashews and pecans. There is no gluten. The chocolate-covered candies contain milk. (FAQ)

Premium Chocolatiers: Chocolate bunnies, lollipops, truffles, chocolate eggs. Free of milk, egg, gluten, peanut and tree nuts. (FAQ)

Simply Nut Free Chocolates: (NEW) European-style chocolate. Easter selections include chocolate bunnies, eggs and lollipops. They also make candy-coated chocolate and pretzel bark. There are no eggs or sesame in the facility. Some products are gluten-free. (FAQ)

Sixlets: Candy-coated chocolate candies. Some are free of peanuts and tree nuts; others are free of egg. Read each label and contact the company to verify. (Product listing)

Skips: Chocolate bunnies, carrots, ducks and other sweets. The company has a peanut/tree nut facility in addition to their regular store. See the disclaimers on their products. (FAQ and Disclaimer)

Tootsie: Pops, Rolls, Dubble Bubble, etc. Candies are free of peanuts, tree nuts and gluten. (FAQ)

Learn more about TruJoy Sweets [ad]

TruJoy Sweets: Organic bunny lollipops are nut-free and gluten-free. The candies are free of corn syrup, free of artificial colors and flavors, gluten-free, vegan and kosher. (FAQ)

Vermont Nut Free: Chocolate bunnies, lambs, marshmallows, buttercream bunnies, toffee crunch, pretzel caramel bark and Easter baskets. Some products may contain dairy, eggs, wheat or soy. All products are peanut, tree nut, sesame and coconut-free. (FAQ)

Also all products on the Free of Top 8 Allergens list.

MILK-FREE AND EGG-FREE

Amanda's Own: Chocolate bunnies, candies, lollipops, jelly beans. Free of milk, peanut, tree nuts, egg, gluten, sesame, and corn (except for jelly beans). The company's Sunflower Cups continue to have a warning label for possible traces of soy. When the current supply of SunButter is finished, they will clean their facility to remove any traces of the old product. (FAQ)

Divvies: Chocolate bunnies, gummies, jelly beans, baking chips. Free of peanut, tree nuts, milk, egg and sesame. Some products may be free of additional allergens. (FAQ)

eatingEVOLVED: (NEW) Gluten-free, peanut-free, dairy-free, soy-free chocolate bars in multiple flavors. They also make chocolate spreads and coconut butter cups in a variety of flavors. Some products contain almonds. All products are made on shared equipment with almonds. Check with your allergist as to what is safe for your child. (FAQ)

Gimbals: Jelly beans, fruit chews and more. Free of milk, egg, gluten, peanut, tree nuts and soy. (FAQ)

Moo Free: Chocolate eggs, bunnies and bars in various flavors. Free of milk, egg, wheat and gluten. May contain tree nuts and soy. UK-based company. Some products can be purchased online in the U.S. (FAQ)

Premium Chocolatiers: Chocolate bunnies, lollipops, truffles, chocolate eggs. Free of milk, egg, gluten, peanut and tree nuts. (FAQ)

Sweet William: Bunnies and bars. Free of milk, egg, gluten, peanut and tree nuts. May contain soy. Australian company; may also be available in parts of Europe, Asia and the Middle East, in stores or online. (FAQ)

Also all products on the Free of Top 8 Allergens list.

SOY-FREE

eatingEVOLVED: (NEW) Gluten-free, peanut-free, dairy-free, soy-free chocolate bars in multiple flavors. They also make chocolate spreads and coconut butter cups in a variety of flavors. Some products contain almonds. All products are made on shared equipment with almonds. Check with your allergist as to what is safe for your child. (FAQ)

Gimbals: Jelly beans, fruit chews and more. Free of milk, egg, gluten, peanut, tree nuts and soy. (FAQ)

Spangler: Dum Dums Lollipops, Dum Dums Gummies, Saf-T-Pops, Circus Peanuts. Free of top 8 allergens, but most may have traces of soy oil. Spangler candies may be rebagged by other retailers; check the package to see if the product came from a Spangler facility. (FAQ)

Also all products on the Free of Top 8 Allergens list.

WHEAT-FREE AND GLUTEN-FREE

Amanda's Own: Chocolate bunnies, candies, lollipops, jelly beans. Free of milk, peanut, tree nuts, egg, gluten, sesame, and corn (except for jelly beans). The company's Sunflower Cups continue to have a warning label for possible traces of soy. When the current supply of SunButter is finished, they will clean their facility to remove any traces of the old product. (FAQ)

Gimbals: Jelly beans, fruit chews and more. Free of milk, egg, gluten, peanut, tree nuts and soy. (FAQ)

GoOrganic Candy and Hillside Sweets: Flavored candy chews and hard candy free of gluten, peanut, tree nuts, egg, milk and soy. Processed on same equipment as milk and soy. (FAQ)

Moo Free: Chocolate eggs, bunnies and bars in various flavors. Free of milk, egg, wheat and gluten. May contain tree nuts and soy. UK-based company. Some products can be purchased online in the U.S. (FAQ)

Premium Chocolatiers: Chocolate Bunnies, Lollipops, Truffles, Chocolate Eggs. Free of milk, egg, gluten, peanut and tree nuts. (FAQ)

Tootsie: Pops, Rolls, Dubble Bubble, etc. Candies are free of peanut, tree nuts and gluten. (FAQ)

TruJoy Sweets: Organic bunny lollipops, Fruit Chews, and new Choco Chews. These candies are all gluten-free. The Fruit Chews and Choco Chews are formulated free of the top 8 allergens, but made on shared equipment that processes peanuts, tree nuts, dairy and soy. The Organic Bunny Lollipops are made in a different facility and are peanut, tree nut and gluten free.  All the TruJoy Sweets candies are free of corn syrup, free of artificial colors and flavors, gluten free, vegan and kosher. (FAQ)

Also all products on the Free of Top 8 Allergens list that are free of wheat (and possibly gluten - check all labels).

CORN-FREE

Amanda's Own: Chocolate bunnies, candies, lollipops, jelly beans. Free of milk, peanut, tree nuts, egg, gluten, sesame, and corn (except for jelly beans). The company's Sunflower Cups continue to have a warning label for possible traces of soy. When the current supply of SunButter is finished, they will clean their facility to remove any traces of the old product. (FAQ)

Natural Candy Store: Online retailer for bunnies, jelly beans, chocolate for Easter eggs, baskets and baking decorations. Use the advanced search to find multiple top 8, corn and artificial dye-free options sourced from other companies. (FAQ)

St. Claire's Organics: Mints and fruit tarts. Free of top 8 allergens and corn. (FAQ)

TruJoy Sweets: Organic bunny lollipops and new Choco Chews are corn-free. Fruit Chews contain ascorbic acid that is derived from corn. The Fruit Chews and Choco Chews are formulated free of the top 8 allergens, but made on shared equipment that processes peanuts, tree nuts, dairy and soy. The Organic Bunny Lollipops are made in a different facility and are peanut, tree nut and gluten free.  All the TruJoy Sweets candies are free of corn syrup, free of artificial colors and flavors, gluten free, vegan and kosher. (FAQ)

YumEarth: Candy Drops are free of corn plus free of top 8 allergens, sesame and more. (FAQ)

INTERNATIONAL:

Moo Free: Chocolate eggs, bunnies and bars in various flavors. Free of milk, egg, wheat and gluten. May contain tree nuts and soy. UK-based company. Some products can be purchased online in the U.S. (FAQ)

Sweet William: Bunnies and bars. Free of milk, egg, gluten, peanut, tree nuts; may contain soy. Australian company; may also be available in parts of Europe, Asia and the Middle East, in stores or online. (FAQ)

This information is for your convenience only. It is not an endorsement or guarantee of the product's safety. Read every ingredient label and contact the manufacturer to confirm the safety of a product for your child. Labels may change from one product size to the next, or from one region of the country to the next. Some candies made by one company may be rebagged by another company; remember to check outer package labels as well.

Kids With Food Allergies thanks TruJoy Sweets and Surf Sweets for sponsoring this blog post.

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