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 |
National Conference
The Second National Conference was held June 20-21 in Baltimore, MD, with a full schedule of patient meetings, scientific sessions and exhibitors. More than 1,300 family members, healthcare providers, and industry and government representatives attended the conference, which featured over 20 clinical immunologists as well as 60 allied health professionals specializing in immunology. In addition, the IDF launched an Endowment and Capital Campaign, recognized key individuals and sponsors, released survey findings and hosted an extravaganza at the Pier Six Concert Pavilion.
Survey Results
The IDF recently conducted an in-depth patient survey to provide the first comprehensive portrait of the treatment of the primary immune deficiency disease (PIDD) population. Results from this nationwide treatment report, released June 20, showed that there is an average nine-year delay from onset of symptoms to diagnosis and that these genetic diseases, once thought to be primarily a pediatric problem, now affect more adults than children.
The major health surveys conducted by the U.S. government – the National Health Interview Survey and the National Health and Nutrition Examination Survey – do not collect information on primary immune deficiency diseases. No comprehensive population survey has ever been undertaken by the federal government to estimate the prevalence or the population characteristics of PIDDs in the United States.
The findings provide useful information in determining patient concerns and needs. This information will help direct the IDF’s future programs. The full results of the survey are available at www.primaryimmune.org or by calling the IDF at (800) 296-4433.
Advocacy
Preceding the National Conference, patients and their families stormed the nation’s capitol during IDF Capitol Hill Day to voice support for two important initiatives: NIAID’s Primary Immunodeficiency Disease Consortium and Medicare coverage of home infusion of IGIV. IDF recognized Senator Mary Landrieu (D-La.) with its Public Policy Award for doubling funding at the National Institutes of Health, and for increasing public awareness and monitoring of PIDD threats through the NIH and U.S. Centers for Disease Control and Prevention.
Mark your calendars
The deadline for the IDF Research Grant proposal and the IDF Fellowship Grant application, is November 1. For more information call (800) 296-4433.
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Food Allergy & Anaphylaxis Network
10400 Eaton Place, Suite 107
Fairfax, VA 22030
Phone 800-929-4040
Fax (703) 691-2713
www.foodallergy.org |
School Epinephrine Policies Vary Widely
FAAN completed a telephone review of state epinephrine policies in school settings, and found little consistency from state-to-state or even within a single state. Some schools allow food-allergic children to carry epinephrine, but others do not. Some schools also have nurses on staff at all times. In many cases, such policies and emergency response plans are developed at the local or school level.
Parents of children with food allergies must be aware that emergency treatment provisions are often guided by local policy. We encourage all parents to carefully coordinate their plans with school officials. This is the best way to ensure your children are safe during the school day.
Nationally, anaphylaxis has been included in a list of “Medical Emergencies that Occur in the School Setting,” the basis for the “Recommended Minimal Emergency Equipment and Resources for Schools” document. The guide is issued by the National Association of School Nurses in conjunction with the Department of Education and other national organizations.
FAAN’s Research Initiative Underway
FAAN’s Board of Directors recently voted to significantly increase our participation in research, one of the four points of our mission statement. To date, $1 million has been pledged to FAAN’s Research Initiative. We have also received a challenge grant. For every dollar raised, our donor will match the amount up to $250,000 to further support research. We’ll be working with our Research Advisory Board to shape and direct our participation in research efforts. We’ll continue to keep you informed of these efforts.
Peanut Allergy Studies in the News
FAAN joined forces with the AAAAI at a press conference to discuss the July release of seven new peanut allergy studies published in the Journal of Allergy and Clinical Immunology. The research gives new hope to peanut allergy patients and was covered by newspapers, magazines, television and radio stations throughout the United States.
In its role as a patient advocate, FAAN continues to emphasize physician guidance and adherence to emergency treatment plans that include the use of antihistamines and epinephrine.
Fatal Anaphylaxis Update
Unfortunately, we must report another fatality from peanuts. FAAN was informed of the tragic death of a 29-year-old man with a known peanut allergy. The man died as the result of a reaction after he ate food from a Chinese buffet at a hotel restaurant. He did not have his medication with him, according to press reports, and died before he could get treatment.
Please share the lessons we learn from such tragedies and remind patients that they must carry medications with them at all times.
Thank You for Your Support
Thank you for your continuing support of our work on behalf of patients with food allergies. Please continue to let patients know about FAAN and direct them to our Web site (www.foodallergy.org) or our toll-free number (800-929-4040) for free information and guidance.
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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 |
50 Years Together:
The Academy, College and Foundation
In 1953 the American Academy of Allergy, Asthma and Immunology and the American College of Allergy, Asthma and Immunology joined efforts to create a patient-centered organization: the Asthma and Allergy Foundation of America. Since then, the Academy, the College and the Foundation have worked together to improve the lives of patients with asthma and allergies. The Foundation will celebrate this 50th anniversary landmark with year-long observances and with new national initiatives in research support, patient education and advocacy. Visit www.aafa.org to learn more.
Research:
National poll reveals impact of allergies
More than half (67 percent) of all allergy sufferers consider their allergies to be “moderate” or “severe,” according to the findings of a recent Harris poll conducted by the Foundation and a pharmaceutical sponsor. The national telephone survey was designed to uncover perceptions about the lifestyle impact of allergies, and to learn about attitudes among patients. More than 90 percent of respondents say they “don’t want allergies to limit what I do [or] how I live my life,” but only 13 percent of them feel knowledgeable about allergy prevention and treatment. The Foundation will announce full results of the study, and new initiatives to better educate patients, this fall.
Education:
Take course online
The Foundation’s popular course for allied health professionals, Asthma Management and Education, is now available online. Earn continuing education credits from the convenience of your computer at home or work. Learn the latest techniques in asthma care and receive current and reliable patient education information and materials that comply with the NIH NHLBI guidelines. Contact the Foundation toll-free at 1-888-212-1220 to register and get your access information. Visit www.aafa.org to see a course outline.
Advocacy:
Chapters meet in DC for training
The Foundation recently held its annual Chapter conference in Washington, DC, for Chapter Executive Directors. The Foundation’s nationwide network of Chapters provides a variety of critical services at the local level, from patient education and outreach, to policy advocacy, support group assistance and public education. The conference, held prior to the NIH HHS 2003 National Conference on Asthma, focused on national and local advocacy issues and skill-building for outreach in Chapter regions. For more information, visit the Chapter pages 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 |
Hispanic Outreach
AANMA’s Hispanic Outreach Director, Ana Aponte, co-hosts a monthly Spanish radio program called “The Woman’s Hour” on Radio Universal AM 1460 located in Manassas, VA. Each hour presents specific allergy and asthma topics, offering listeners the opportunity to call in and ask questions or participate in the discussion. Topics such as Asthma and Exercise, How to Prepare Your Child with Allergies and/or Asthma for School, When Asthma Occurs, and Asthma Myths have been featured.
The show also promotes the availability of AANMA services for the Hispanic community which include a toll-free help line and educational materials such as the Spanish version of AANMA’s Breathing for Two: A Guide to Asthma During Pregnancy. Respirando Por Dos, coauthored by James Kemp, MD, FAAAAI, Michael Schatz, MD, MS, FAAAAI, and AANMA President Nancy Sander, has been endorsed by the AAAAI and the Association of Asthma Educators, and sponsored by a grant from AstraZeneca.
The publication can be downloaded free from the AANMA Web Site at www.breatherville.org/medicalcenter.
ASTHMA 2003 Legislation
HR 2023, the Asthmatic Schoolchildren’s Act of 2003 (ASTHMA 2003), was introduced by Rep. Cliff Stearns (R-FL) at AANMA’s sixth annual Asthma Awareness Day Capitol Hill on May 7, 2003. ASTHMA 2003 provides funding preference in awarding asthma-related grants to state and local education agencies in states whose statutes protect student rights to carry and self-administer prescribed lifesaving asthma and anaphylaxis medications while at school or at school-sponsored activities.
Since our last report, Oklahoma, Mississippi, and New Hampshire have joined the list of states that allow students to carry and self-administer their asthma medications while at school. We continue to target the remaining 26 states that do not protect these student rights. We have made great progress over the past year, but there is still much work to be done!
Does your state protect students and your patients? Find out today! Visit AANMA’s Web Site at www.breatherville.org/cityhall/ch_childrights.htm or contact Marissa Magnetti at mmagnetti@aanma.org, to find out more about the campaign and how you can get involved.
Association of Asthma Educators Conference
Sandra Fusco-Walker of AANMA presented AANMA’s poster, A State-by-State Study of Legislation and Statutes Protecting Student Rights to Carry and Use Prescribed Lifesaving Asthma and Anaphylaxis Medications at the Association of Asthma Educators annual conference in Dallas, TX, on July 12.
Many asthma educators expressed specific frustrations with school districts that denied their patients the right to carry these prescribed life-saving medications and made a commitment to call their congressional representatives to voice their support of Asthma 2003. (See ASTHMA 2003 legislation.)
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