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Academy News: November 2004
Lay Organizations
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Immune Deficiency Foundation
40 West Chesapeake Avenue
Suite 308
Towson, MD 21204
Phone (800) 296-4433
www.primaryimmune.org |
 New IDF president
The Immune Deficiency Foundation Board of Trustees named Richard C. Birkel, PhD, as the new president in August. Birkel brings more than 30 years of leadership experience in non-profit human services management, academia and government to IDF.
Prior to joining the IDF, Birkel served as the executive director of the National Alliance for the Mentally Ill (NAMI), the nation’s leading grassroots advocacy organization for the 15 million people in the United States with severe mental illnesses. Prior to his appointment with NAMI, Birkel served for seven years as president of the Lt. Joseph P. Kennedy Institute, one of the flagship agencies of the Catholic Archdiocese of Washington, DC. His policy and program responsibilities included mental illness, developmental disabilities, substance abuse, homelessness, HIV/AIDS, education, employment and aging.
A psychologist by training, Birkel has been a member of many boards including the National Health Council, the Geriatric Mental Health Foundation and the Council on Quality and Leadership in Disabilities. He has published and presented numerous academic papers and served as principal investigator for more than 12 national research projects. Birkel received his bachelor’s degree from Yale University and his master’s and doctorate degrees from the University of Virginia. He also earned a master’s degree in public administration from the University of Virginia.
IDF National Conference
The third IDF National Conference is scheduled for June 23-25, 2005. The conference will be held in Lake Buena Vista, FL, at Disney’s Contemporary Resort. More than 1,000 individuals and physicians nationwide are anticipated to attend.
Attendees will learn about developments in the treatment and diagnosis of primary immune deficiency diseases along with innovative life management skills during the educational sessions. In addition, individuals have an opportunity to meet and relate to other families with primary immune deficiency diseases. Registration for the conference begins in January and will be available online at www.primaryimmune.org.
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Food Allergy & Anaphylaxis Network
11781 Lee Jackson Highway, Suite 160
Fairfax, VA 22030
Phone (800) 929-4040
Fax (703) 691-2713
www.foodallergy.org |
 International patient group representatives gather for 4th annual food allergy conference
FAAN hosted the 4th annual Food Allergy & Anaphylaxis Alliance (Alliance) meeting recently. Representatives from Australia, Canada, England, Italy, Japan, Netherlands, New Zealand and the United Kingdom attended the four-day meeting to strategize on a host of issues to benefit the lives of food-allergic individuals in their respective countries. Proper food labeling, patient education and outreach, epinephrine availability, research findings and updates, working with allergist’s associations, and public policy were among the topics covered. The goals of the Alliance for this coming year are posted on www.foodallergyalliance.org.
Labeling update
Kellogg’s® notified members in August that two flavors of Pop Tarts® that were previously milk-free would soon contain whey. The outcry from the food allergy community was swift. Many families see this product as a safe, fun treat for their children and did not want to lose another food choice. In response to the feedback, Kellogg has decided to continue to offer fruit-flavored Pop Tarts® and Brown Sugar Cinnamon Pop Tarts® without a milk ingredient.
 Trick or treat for food allergy
Instead of collecting treats for Halloween, children with food allergies participated in FAAN’s 2nd annual Trick or Treat for Food Allergy Halloween Coin Collection Program. Specially-designed Halloween coin collection boxes were sent to FAAN members nationwide. The Ross Products Division of Abbott Laboratories sponsored this year’s event. The program will benefit FAAN’s research and education activities. Those interested in participating in the 2005 program should contact FAAN at (800) 929-4040. Groups and organizations are encouraged to participate.
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Asthma and Allergy Foundation of America
1233 20th St. NW, Suite 402
Washington, DC 20036
Phone (202) 466-7643
Fax (202) 466-8940
www.aafa.org |
 Research: national clinical trials database online
AAFA launched a free database of clinical trials. The Clinical Trials Resource Center, presented in partnership with Thomson CenterWatch, is free for visitors to AAFA’s Web site, www.aafa.org. Physicians and patients can see a full listing of asthma and allergy trials all over the United States, search government trial listings, read about new medical therapies in development, sign up for e-mail notifications, find the latest drug approvals and more.
Education: new allergy patient “quick cards” available free
AAFA offers new “QuickAllergyTM Cards,” for your patients to learn life-saving information. The cards include, “Your EpiPen® - Storage, Usage and Disposal,” and “Allergy Emergencies - Is This Anaphylaxis?,” and are heavy-duty, 5-inch by 7-inch cards that are ready to personalize and tuck into a purse, briefcase or backpack. You can order several sets for patients, parents, caregivers, teachers and family members. Order a free supply of these cards and other materials at www.aafa.org.
Advocacy: special letter to FDA emphasizes patient issues
The FDA issued a proposed rule on whether Chlorofluorocarbons (CFCs) in albuterol metered-dose inhalers (MDIs) should continue to be considered an essential use exemption. AAFA signed a comment letter submitted to the Food and Drug Administration (FDA) by the U.S. Stakeholders Group on MDI transition, and a separate letter emphasizing that:
- Setting an official transition date is a matter better left to the FDA with continued input from all parties
- Asthma patients are not “inelastic” in their purchases of expensive inhalers
- Subsidy programs by CFC-free inhaler manufacturers must meet the needs of the most vulnerable patients
- The transition is an opportunity to educate physicians and patients about appropriate asthma management
To learn more about AAFA advocacy efforts, visit our Web site at www.aafa.org.
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Allergy & Asthma Network Mothers of Asthmatics
2751 Prosperity Ave., Suite 150
Fairfax, VA 22031
Phone 800-878-4403
Fax (703) 573-7794
www.aanma.org
E-mail aanma@aol.com |
 Free Allergic Asthma For Dummies
Free help for your patients struggling with allergic asthma is on the way from AANMA, in the form of Allergic Asthma For Dummies, by William E. Berger, MD. This 48-page mini-book features step-by-step allergic asthma management strategies, as well as information on how to recognize symptoms, avoid triggers and create an effective management plan. AANMA brings it to you and your patients free of charge. To order multiple copies for your waiting room, call (800) 878-4403 or visit our Web site, www.breatherville.org.
Advocates in action online
Making America’s schools a safer place for students with asthma and anaphylaxis just got easier with AANMA’s Advocacy Action Center, located at www.breatherville.org/cityhall. Log on and ask elected officials to support federal and state legislation allowing students to carry prescribed asthma inhalers and auto-injectable epinephrine while at school. Using it is easy. Simply click on Action Alert to enter your zip code, locate your senators and representatives, and compose a message or use the sample letter provided. You can also check the Students and Medications at School section to view the status of state laws across the country including yours. Call Sandra Fusco-Walker at (800) 729-3804 or e-mail sfwalker@aanma.org with questions.
Allergy & Asthma Today magazine
Looking for an invaluable resource about allergies, asthma and COPD-related conditions? You’re in luck! The fall issue of Allergy & Asthma Today (AAT) is hot off the presses. Articles include an intriguing look at the language of asthma and the importance of expressing specifics, a status report on legislation to protect the rights of students with asthma and anaphylaxis, and an in-depth article on nebulizer medications, along with much, much more. To receive Allergy & Asthma Today and provide your patients with up-to-date, user-friendly information, call (800) 878-4403 or e-mail memserv@aanma.org about membership.
 Latex Allergy Awareness Week
The American Latex Allergy Association (ALAA) teamed up with Kimberly-Clark Health Care and the MedicAlert Foundation to promote awareness and education during this year’s Latex Allergy Awareness Week, October 3-9.
Kimberly-Clark and ALAA distributed “Latex Allergy Alert” kits free of charge to healthcare facilities. The kits can be ordered online from www.latexallergyresources.org, or www.kchealthcare.com/latexawareness and include:
- Kimberly-Clark FirstHAND on glove-associated reactions – The Knowledge Network* FirstHAND series was first developed in 1993 and today covers a wide range of glove-related topics including glove-associated reactions, barrier protection, powder complications and glove selection.
- Posters – These posters, size 11-by-17, include information on latex allergy symptoms, identification of individuals who are most susceptible to developing a latex allergy, and statistics on the prevalence of latex allergies in health care workers and the general population.
- Allergy bands – Latex allergy ID bands, in a distinctive purple color, can be worn by latex-allergic patients.
- Latex-free resource guide – This guide contains a list of latex-free healthcare products offered by Kimberly-Clark, as well as answers to frequently-asked questions about latex allergies.
- Sample of Purple Nitrile* gloves – Purple Nitrile* exam gloves are the leading latex-free alternative in the United States.
Kimberly-Clark will also be providing educational programs on latex allergies throughout the United States during Latex Allergy Awareness Week.
MedicAlert is supporting Latex Allergy Awareness Week by offering its lifesaving service at a $5 discount to those with latex allergies. For further information about this opportunity, e-mail cmalekos@medicalert.org.
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The American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond, TX 77469
Phone (713) 498-8216
Fax (281) 238-9436
www.apfed.org
E-mail mail@apfed.org |
 APFED updates Web site
APFED is pleased to announce that after months of work our new Web site is finally complete. The new site has been thoroughly updated and expanded in all aspects, from the aesthetic to the medical content. In addition to an explanation of eosinophilic disorders, you will find thorough discussion of diagnosis, treatment and comprehensive literature lists.
There are new sections offering tips and support for those on limited and elemental diets, pediatric issues, adult issues, links to related sites and much, much more. In an effort to further support all patients affected with eosinophilic disorders, we have added entire sections on hypereosinophilic syndrome (HES) and Churg-Strauss Syndrome (CSS). We feel confident the new site is easy to navigate, and will become a welcome resource globally for physicians and their patients.
NEJM recognizes increased incidence of Eosinophilic Esophagitis
The current rise in diagnosis of Eosinophilic Esophagitis (EE) was duly recognized in the August 26, 2004, issue of the New England Journal of Medicine (NEJM), www.nejm.org. A letter to the editor stating increased incidence of EE was published with excellent follow-up reporting.
Richard J. Noel, MD, now at Children’s Hospital of Wisconsin; Philip E. Putnam, MD; and Marc E. Rothenberg, MD, PhD, FAAAAI, of Cincinnati Children’s Hospital, have established a finding that the annual incidence of EE in the pediatric population for Hamilton County (OH) was 1 per 10,000 from 2000 to 2003. This data suggests that the incidence of eosinophilic esophagitis may be higher than that of other well-recognized inflammatory gastrointestinal disorders (e.g., Crohn’s Disease). Recognition by the NEJM of the increase in incidence and diagnosis of eosinophilic esophagitis gives credence to the theory that EE may be far more prevalent than many suspect, but currently under-diagnosed. In the past few years many important articles have been published in numerous credible medical journals regarding EE. APFED is pleased to see medical and public awareness of EE increase alongside incidence.
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