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Academy News: May 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 |
IDF family retreats
IDF will host four regional family retreats in 2004, to be held in the northwest, northeast, southwest and southeast regions of the U.S. Participants attend both scientific and life management skills workshops to hear directly from the experts. Leading allergist/immunologists, physicians and IDF staff will lead sessions, and a youth program is also included. This marks the sixth year for the program.
Primary Immune Deficiency Awareness Week
IDF sponsored the following events during Primary Immune Deficiency Awareness Week, April 18-24.
Primary immune deficiency disease clinical care guidelines
The Clinical Care Guidelines Meeting, held April 15-16 in Raleigh, NC, addressed poor health outcomes, lack of specialized health care and less than optimal treatment experienced by primary immune deficient patients. IDF brought together renowned experts to discuss and plan the development of patient- and family-oriented, comprehensive, evidence-based, diagnostic and clinical-care guidelines for a select group of the more prevalent primary immune deficiency diseases. The guidelines are intended to include recommendations, strategies and other information that will assist patients and physicians in making educated decisions about appropriate health care for individuals with primary immune deficiency diseases.
Putting a Face on Primary Immune Deficiency Diseases
This campaign educates plasma donors on the life-saving treatments they are helping to provide with their donation. Plasma donors undergo a rigorous screening to ensure their plasma can be used in blood products and are generally paid a fee for their donation. This fee may be donated back to IDF through the Putting a Face on Primary Immune Deficiency Diseases program, and used specifically to underwrite the cost of sending families to the IDF Family Retreats.
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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 |
FAAN launches Seafood Allergy Registry
FAAN has launched a Seafood Allergy Registry, a survey that will allow scientists to learn more about allergic reactions to fish and shellfish. The registry is open to anyone with an allergy to any type of fish or shellfish. Surveys were sent to FAAN’s 26,000 members and allergist/immunologists who are members of the AAAAI or American College of Allergy, Asthma & Immunology (ACAAI). Additional forms are available on FAAN’s website, www.foodallergy.org/research.html.
FAAN hopes to learn as much as possible about the kinds of seafood to which individuals are allergic, frequency and severity of reactions, and at what point in their lives the allergy develops.
Food Allergy Awareness Week information available
The 7th annual Food Allergy Awareness Week (FAAW) will be observed nationwide May 9-15. This year’s theme, Prepare to ACT: Avoid offending foods, Carry medications, Treat symptoms quickly, is part of FAAN’s major education and awareness initiative to ensure that Americans with food allergies develop healthy avoidance strategies and life-saving treatment plans.
Food Allergy Awareness Week activity kits are available to local communities and organizations interested in raising awareness about food allergy. Visit www.foodallergy.org to download the free materials or call (800) 929-4040.
FAAN summer camp tips available
Helpful tips for managing food allergies at summer camp are now available for camp counselors and parents on FAAN’s Web site. Additionally, Guidelines for Managing Food Allergies at Camp, a document developed in cooperation between FAAN and the Association of Camp Nurses, can also be found online. The guidelines define the camp’s responsibilities as well as those of the families managing food allergies, to ensure that food allergies are managed safely in the camp setting.
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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: first annual Asthma Capitals™revealed
From Scranton, PA, to Sacramento, CA, asthma has a significant impact on every major city in the United States, according to our recent research-based rankings of the 2004 Asthma Capitals™ The top five Asthma Capitals™for 2004 are:
- Knoxville, TN
- Little Rock, AK
- St. Louis, MO
- Madison, WI
- Louisville, KY
The Asthma Capitals™research considered prevalence, as well as 14 other factors such as key environmental, medical and health-outcomes data. Traditional prevalence rankings usually show how widely asthma affects each community, but the Asthma Capital™rankings show how each community affects asthma and how certain factors affect the quality of life of asthma sufferers.
This is the first year for the Asthma Capitals™rankings, and AAFA will continue to conduct the research and release the rankings each year. A complete list of cities and more about the research methodology is available at www.AsthmaCapital.com.
Education: You Can Control Asthma®
You Can Control Asthma® is a validated asthma education program designed to give children, ages 6 to 12, and their families more self-confidence, knowledge and skills to control asthma. It consists of a set of parallel workbooks for children and their parents, which teach principles of asthma management through pictures, captions and activities. These low-literacy materials, available in English and Spanish, can be incorporated into any asthma education program. The You Can Control Asthma® books adhere to the National Heart, Lung and Blood Institute’s Guidelines for the Diagnosis and Management of Asthma. For more information, visit www.aafa.org.
The American Latex Allergy Association has released the 2nd edition of “Emergency Medical Services Guidelines for the Care of the Latex-Allergic Patient.” Contents include the background of latex allergy, suggested guidelines for latex-safer practice, list of references and additional reading, and supplemental documents. The manual has been partially funded by an educational grant from Dey and can be purchased for $35.
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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 introduction
The American Partnership for Eosinophilic Disorders (APFED) is the newest member of the AAAAI lay organizations. APFED was founded in 2002 to bridge an urgent gap in advocacy and research, and to support patients and their families suffering from eosinophilic gastrointestinal disorders (EGID) and hypereosinophilic syndrome (HES).
In the two years since our inception, APFED has formed invaluable partnerships with leading physicians, researchers and institutions that are working toward better diagnoses and treatments of eosinophilic disorders. Our medical advisory board consists of 11 members from differing specialties, each of whom has a commitment to furthering APFED’s cause.
APFED has hosted two patient education conferences, featuring leading physicians from around the country. Our conferences provide a rare opportunity to hear of current research firsthand and to be able to compare the current treatment methods from differing institutions. These conferences provided a means for EGID patients and their families to come together in an effort to educate and support the EGID community. Our next patient education conference is planned for summer 2005.
EGID Awareness Month
April was the first annual National EGID Awareness Month. APFED members reached out to their own communities in an effort to increase awareness and fundraise toward research. Multiple events were planned including walks, read-a-thons and a gala ball.
APFED goals
Perhaps the single most important goal APFED has is the development of standardized diagnostic criteria for disorders such as eosinophilic esophagitis, eosinophilic gastroenteritis, and eosinophilic colitis. Until we’ve achieved widespread recognition of EGID and standard criteria for diagnosis, obtaining proper treatment will remain difficult. We are working in conjunction with our medical advisory board toward hosting a symposium of physicians that will spearhead this campaign.
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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 |
Asthma Awareness Day Capitol Hill 2004
Asthma Awareness Day Capitol Hill 2004 (AADCH) is just around the corner. Join AANMA in Washington, DC, May 5-8 for the biggest asthma and allergy advocacy event of the year!
- On May 5, AANMA briefs Congress on medication safety, healthcare access and students’ rights to carry and administer prescribed medications.
- Tour the U.S. Capitol, visit Congressional representatives, tour the Air & Space Museum or take an allergy safari at the National Zoo May 6-7.
- AANMA’s Asthma & Allergy Family Expo welcomes visitors May 8. The free event features asthma screenings and consultations with board-certified allergist/immunologists, educational workshops, activities for children and information booths.
Contact Stacy Brooks at (800) 878-4403 or visit www.breatherville.org/cityhall for more information.
Reaching new communities
Thanks to a grant from the Centers for Disease Control and Prevention (CDC), AANMA is developing a Hispanic outreach program to educate Spanish-speaking communities about asthma, allergies and anaphylaxis. To kick off the program, AANMA welcomed three Hispanic Outreach Service Coordinators (HOSC) to our growing, national volunteer team.
Join the HOSC program, contact Desirée Diez at (800) 878-4403, ext. 114, or e-mail ddiez@aanma.org.
Allergy & Asthma Today magazine
AANMA’s spring issue of Allergy & Asthma Today (AAT) magazine is ready. Balancing Act: Keeping Yourself Together provides tips for staying centered and energized when life gets out of control. Who’s in Charge explores AANMA’s position on issues that affect doctors’ freedom to treat patients, including restrictive insurance company medication lists, inappropriate pharmacy compounding of medications, and school policies that affect students’ access to lifesaving medications.
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