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Academy News: January 2003Lay Organizations
Consortium to fund research on primary immune deficiency diseases 
On October 3, 2003, an international research network assembled by the Immune Deficiency Foundation (IDF) received $12.8 million in funding for the next five years to study primary immune deficiency diseases (PIDD). It was the largest contract ever awarded to study these rare diseases. Named the U.S. Immunodeficiency Network (USID Net), the consortium of leading researchers will develop and oversee an ambitious and comprehensive research agenda and distribute funds to individual researchers. USID Net is funded by the National Institute of Allergy and Infectious Diseases and the National Institute of Child Health and Human Development, which are components of the National Institutes of Health (NIH), an agency of the Department of Health and Human Services. USID Net administrative support is provided by the IDF. USID Net will specifically:
In addition to evaluating and funding research projects, the consortium will mentor physicians and scientists to foster long-term interest in the fields of primary immune deficiency. They will also establish a collection of cell lines and DNA, which will be made available to qualified researchers to investigate aspects of these diseases. Concept research proposals may be submitted at anytime Upon evaluation by the review committee, candidates may be invited to submit a full application. The review committee will consider full applications on March 1, July 1 and November 1, 2004. Further information on the U.S. Immunodeficiency Network and the research grant application process is available on the consortium Web site at www.usidnet.org or by contacting the Medical Programs Manager, Tamara Brown, at (800) 296-4433 or tb@primaryimmune.org.
2004 FAAN food allergy conferences 
The Food Allergy and Anaphylaxis Network’s (FAAN’s) 11th annual food allergy conferences, Food Allergy: Education & Awareness Saves Lives, begin in April. Conferences will be held Saturday, April 24, at the Renaissance Hotel in Baltimore, MD; Saturday, May 15, at the Wyndham Northwest, Chicago, IL; and Saturday, June 5, at the Hilton Rye Town, New York, NY. The one-day meetings offer families, healthcare professionals, school administrators, childcare providers, camp leaders and others the opportunity to learn first-hand from food allergy experts. For more information or to request registration information, contact FAAN at (800) 929-4040. State EMT policy update Thanks to years of work and discussions with allergists, doctors, regulators and legislators throughout the nation, a growing number of states have made epinephrine available for administration by emergency medical technicians (EMTs). FAAN has identified 13 states and the District of Columbia that still need legal or regulatory improvements for greater epinephrine coverage by EMTs. States needing improvements include: Alabama, Arkansas, Arizona, Idaho, Missouri, Montana, Nebraska, Nevada, South Carolina, South Dakota, Utah, Vermont and West Virginia. Please lest us know if you can help. New airline complaint policy The Department of Transportation (DOT) now requires that commercial airlines record and categorize all written complaints alleging inadequate accessibility or discrimination on the basis of a disability. The new policy is good news for passengers with food allergies, one of the complaint categories listed by the DOT. Please encourage all patients to file written complaints if they feel they’ve been discriminated against based on their food allergy. Food allergy events Several FAAN contests for children and parents with food allergies are underway. There is still time for new participants to enter. For children, the seventh annual Food Allergy News for Kids Poster Contest is accepting entries through February 12. Six individual prizes will be awarded to winners in two categories, ages 4 to 7 and ages 8 to 11. Visit the www.fankids.org Web site for more information. Teens and young adults can participate in the third annual Biunno-FAAN College Scholarship Essay Contest. This contest has a March 1 deadline, and is open to undergraduates and incoming freshmen who have food allergies. Visit www.fanteen.org for details. Through January 15, nominations are also being accepted for the Mariel C. Furlong Awards for Making a Difference. This special award honors those who go above and beyond the call of duty to help someone successfully manage food allergies. Past winners have included AAAAI members, government representatives, nurses, teachers, school administrators, support group leaders and others. Visit www.foodallergy.org for details.
Research: first national benchmark study on asthma/allergy awareness 
The results are in from a nationwide consumer research study conducted in November 2003 by the International Communications Research Corporation. The study was designed to help assess public awareness and attitudes about asthma and allergies on a biannual basis. According to the first study results, fewer than 5% of all respondents correctly identified allergies as a “disease,” and another 24% said they do not consider allergies to be “a serious condition.” Similarly, only 13% of respondents correctly identified asthma as a “disease,” but more than 60% consider asthma a “serious medical condition.” From these few indices, it is clear there is a great amount of public education needed to overcome misconceptions, and to communicate the seriousness of asthma and allergic disease. AAFA is compiling the survey results, and they will be released to the public in early 2004. AAFA will propose an action plan to educate the public based on the findings. Education: get the tools to teach Busy health professionals have the expertise, but often not the time, to develop complete education programs about asthma management for their patients. That’s why so many professionals rely on AAFA’s Meeting-in-a-Box: The Tools of Asthma Management educational program. This turn-key kit makes it easy to teach patients, parents and caregivers about asthma treatment tools including spacers, peak flow meters, inhalers and nebulizers. It’s an all-in-one kit with sample devices, slides and handouts. To find out more, and to see our complete catalog of programs for healthcare providers and patients, visit www.aafa.org. Advocacy: AAFA calls for food labeling Advocates, including AAFA, are working hard to have Congress reintroduce the Food Allergen Labeling and Consumer Protection Act (FALCPA), to make food ingredient statements more clear, accurate and reliable. Ingredients that may cause allergic reactions are currently listed on food labels using terms that are often difficult to understand. The FALCPA would require that food statements list any of the eight major food allergens contained in a particular product in plain language. The legislation would also help close a loophole that exempts spices, flavorings and certain colorings and additives from current ingredient labeling requirements. FALCPA would allow the estimated 7 million American food-allergic consumers to more easily identify a product’s ingredients and protect themselves from harmful foods. The legislation could also help prevent the estimated 150 deaths each year in the United States that are due to the ingestion of allergenic foods. For more information, visit the advocacy pages at www.aafa.org.
Can you count on your MDI? 
A recent research project by Allergy & Asthma Network Mothers of Asthmatics (AANMA) questions the dependability of metered-dose inhalers (MDIs). The study, a telephone survey of 500 people, demonstrated that most people do not know how to tell if their metered-dose inhaler has run out of medication. Two of the study coauthors, Bradley Chipps, MD, FAAAAI, Medical Director, Capital Allergy & Respiratory Disease Center, Sacramento, CA, and AANMA Patient Advocate Sandra Fusco-Walker, presented the results at the annual American College of Allergy, Asthma and Immunology (ACAAI) conference in New Orleans in November 2003. The educational research grant was provided by Sepracor. For more information, visit www.breatherville.org/newsroom or call (800) 878-4403. Allergy & Asthma Today magazine AANMA’s quarterly family education magazine, Allergy & Asthma Today, is growing again. Two new columns will be added soon: “Save This Date,” a nationwide calendar of local events, camp registration dates, contests and important deadlines (listings are free), and “Research: Our Future,” featuring select IRB-approved research programs. The winter issue reveals the personal and respiratory aftermath of the sweeping California fires, takes a practical look at eczema treatments from patient perspectives, and presents Stuart Stoloff, MD, a family practioner, sharing the “Top 10 Things Kids and Their Parents Have Taught Me.” The Asthmatic Schoolchildren’s Treatment and Health Management Act of 2003 is gathering speed across the country. With the support of numerous national organizations and congressional representatives, AANMA is actively working with state advocates to enact laws that protect a student’s right to carry and self-administer prescribed lifesaving asthma and anaphylaxis medications. AANMA and Outreach Service Coordinator (OSC) Carol Finkelstein are working with the Michigan legislature to extend Michigan House Bill 5087, protecting a student’s right to carry asthma medications, to also include a student’s right to carry required anaphylaxis medication. OSCs from 10 states have received their advocacy packets and are working to create state laws allowing students to carry and self-administer their lifesaving medications. AANMA is also traveling to stakeholder conferences around the country presenting up-to-date information about HR 2023 and encouraging advocacy from conference participants. For information or an advocacy packet to initiate laws in your state, please contact Marissa Magnetti at (800) 878-4403, ext. 114 or Sandra Fusco-Walker at (800) 729-3804.
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