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Votes

Finding Information on Allergies

Daughter's case led to national clearinghouse based in Fairfax.

Twenty-two years ago Anne Munoz Furlong's daughter was struggling with undiagnosed food allergies. She would have welcomed a quick accurate diagnosis, a telephone support line and newsletters to consult, food labels identifying allergens and cookbooks with allergen-free recipes. None of these resources were available, but they are now.

Because Munoz Furlong of Fairfax did not want other families "to have to go through what we went through", she founded the Food Allergy and Anaphylaxis Network (FAAN) in 1991.

FAAN is a Fairfax-based national non-profit "clearinghouse for managing food allergies", said Munoz Furlong. FAAN works with schools, food manufacturers, physicians, government agencies, policy makers, research scientists and the Girl Scouts to raise public awareness, provide advocacy and education and advance research.

The greatest challenge people with food allergies face today is "convincing other people that food allergies are real ... That every bite can cause a serious reaction ... that it's a real concern, to a child, to know that birthday cake was made with milk or another allergen....The general public needs to understand there is no break, no seasonal component [as with hayfever] ... you have to eat. You have to have help from other people", said Munoz Furlong

ENLISTING HELP is something FAAN does in a variety of ways. Girl Scouts in the greater Washington, D.C. area can earn a patch after participating in FAAN's "Be a PAL (Protect a Life from Food Allergies) Patch Program."

Troop 3013 became involved when parent Ann Donnelly of Fairfax — whose daughter, Sarah, is a scout and allergic to peanuts, tree nuts and soy — consulted FAAN's instructions for presenting an interactive educational program. The presentation included injecting an expired epinephrine pen into an orange and having the scouts develop safe menus for people with wheat and peanut allergies.

How did the girls react? "They loved it. They were riveted .... Maybe because it was hands-on," said Donnelly. Since the presentation, two years ago, the troop has made changes. "We did change because of the program," said Troop Leader Donna Grier. "Sarah always brought her own snack. Other kids would have homemade and really special snacks and Sara couldn't participate ... I realized I wasn't doing my part. [Now] we only have snacks Sarah can have. The girls have a greater understanding and awareness and appreciation of kids that do have food allergies and what they have to go through ... and they felt good they could do something," said Grier.

FAAN ALSO works with the Food and Drug Administration, food manufacturers, and Congress to make food labels clear and understandable. On Jan. 1, 2006, after a 10-year effort by FAAN, a new food labeling law went into effect requiring manufacturers to clearly identify when any of the eight most common food allergens is an ingredient. The law applies to food labeled after Jan. 1, 2006 which means that products labeled prior may not specify that they contain an allergen. Because there are many ingredients that do not obviously indicate an allergen source such as albumin whose source is egg, Dr. Barbara Mackie of Vienna, an allergy and asthma specialist, said the new labeling law is a step in the right direction.

FAAN is continuing to work for greater food labeling clarity. Munoz Furlong believes a law standardizing the phrase "may contain" a food allergen would result in "labels that can be trusted" and are "truthful." The problem, according FAAN, is that the phrase "may contain" can be broadly applied and products not containing an allergen can be labeled as "may contain." For people with food allergies, it means eliminating the product from their diet which "greatly minimizes their food choices," said Munoz Furlong.

Mackie agreed. "'May contain' means patients must assume it does contain .... It doesn't help answer the question of patients that have food allergies," she said. "Does contain pea or tree nuts would be more helpful for patients and parents."

TO FURTHER EASE the negative impact of food allergies, FAAN awards research grants. This year FAAN will award a million dollars for research of allergy treatment and cures.

Other ongoing efforts for food allergy management include schools, restaurants, families and anyone with questions. FAAN offers a free program to schools in the United States called, "School Food Allergy Program." The program used by "at least 30,000 schools" teaches educators, cafeteria staff, families and students how to create a safe environment for students with food allergies.

FAAN sells a multitude of products including, a guide for restaurant owners, videos, such as, "Alexander The Elephant Who Couldn't Eat Peanuts," cookbooks, pamphlets and memberships for parents and others wanting to learn more. FAAN also publishes a newsletter for members six times a year and offers free on-line "enewsletters" for children and teens.

Anyone can sign-up to receive "Special Allergy Alerts." The program notifies participants when food manufacturers report inaccuracies in their labels. FAAN also answers the public's questions over the telephone.

Donnelly has been a FAAN member for years. "FAAN is fabulous. I could not have done this journey without them. Even though I've done this [managed Sarah's] allergies for 10 years, I'm still learning. I still call on occasion ... recently regarding a soy ingredient. If they don't know, they will direct you," she said.

Donnelly's reaction is what it's all about for founder, Munoz Furlong. "It's my life's work to know that children are safer. That we've saved lives. It's the best that I can hope for ... when I get letters from children saying thank you. It fuels me and my staff. It's an honor ... to impact lives that way."