By Jordan Smith
“No one ever told me that my child would die from asthma,” Tonya Winders, CEO of the Allergy & Asthma Network, quotes the Buckleys from Connecticut, who lost their son Owen very suddenly. Owen’s asthma was exacerbated one day by external conditions that the Buckleys didn’t know to prepare for. They went to the Allergy & Asthma Network for answers; they had other children with asthma and finding those answers was very important to them. Now, they share their story with others to raise awareness and turn their story into something that can help.
50-60 million Americans have mild allergies or asthma. 10 people die every day from asthma; in the U.S., there are 2 deaths from anaphylaxis, a severe life-threatening allergic reaction, each day. For the Allergy & Asthma Network, that’s too many. The Allergy & Asthma Network has an ambitious goal: to end any needless death or suffering due to allergy and asthma. With their four focus areas—education, outreach, research, and advocacy—the Allergy & Asthma Network is able to bring all of the necessary stakeholders—patients, medical professionals, lobbyists, members of the political arena, family members and caregivers—to the table and become the leading national allergy and asthma related nonprofit.
The Allergy & Asthma Network’s success stems from their interdisciplinary approach to patient care. Each of their four focus areas and their related programs bring different stakeholders together to benefit allergy and asthma patients.
As Owen Buckley’s story demonstrates, there is a need for education on allergies, asthma, and related conditions. Allergy & Asthma Network is focused on providing educational materials that are understandable for every allergy and asthma patient and their families. The initial diagnosis for a condition typically takes between 7 and 10 minutes. That usually isn’t enough time for a patient to get beyond the initial shock of their diagnosis. There isn’t enough time to cover all of the information that an allergy and asthma patient needs to know. Allergy & Asthma Network allows for patients to talk in depth with medical professionals about their condition and what they need to know to stay healthy, in terms that every patient can understand.
Education is a huge focus for the Allergy & Asthma Network, from their award-winning publications Allergy & Asthma Today magazine and The Network E-News to providing educational materials in multiple languages to launching a new online learning module, they ensure that everyone has access to the information they need about their condition. This means nothing, however, if patients don’t know that these resources exist. Outreach programs, like the Volunteer Outreach Service Coordinators, meet with community members to increase awareness and understanding of allergy and asthma related conditions. Volunteers regularly attend community events and health fairs in the communities throughout the U.S.
To stay on top of the latest research, medical professionals and researchers at the Allergy & Asthma Network match patients with clinical trials that are right for them. In addition, researchers are working on Decision Mapping, a qualitative research project to measure patient and medical professional beliefs and behaviors. Measuring these trends will help the Allergy & Asthma Network determine how they can best help allergy and asthma patients and their families.
Working with the U.S. Food and Drug Administration, the Allergy & Asthma take critical issues to Capitol Hill every May. Advocacy is necessary to see change and institute policies that will reduce the suffering that allergy and asthma patients and their families face each day. For example, in November 2003, the Allergy & Asthma Network lobbied to have epinephrine available in schools. Epinephrine can treat allergic reactions in emergency situations. 25% of first time reactions will happen in school; meaning that kids may not be aware that they have an allergy and it presents itself for the first time. Since 2003, 48 states have passed a law to have epinephrine in schools. School nurses have documented at least 10 cases where this law has saved a child’s life.
Winders notes the importance of advocacy in helping patients of allergy and asthma feel less disconnected. These patients and their loved ones are at the center of the Allergy & Asthma Network and need a place to voice an opinion. This for her, is what makes her feel so fortunate to be the leader of the Allergy & Asthma network; Winders says, “These are the unspoken heroes who can go through such a tragic event and come out investing in others. The Allergy & Asthma Network highlights these ‘ordinary’ heroes.”
Like the Buckleys, the Johnsons, a family from Ohio, lost a loved one who had asthma. It was hard enough for Tricia Johnson to lose her mom, so when she found out that one of her sons, Savion, had asthma, she didn’t want to lose him as well. The Johnsons worked with the Allergy & Asthma Network to create a comic book for kids that would teach them about allergy and asthma. The series, for 8-13 year olds, features Savion as the main character. The Buckleys and the Johnsons are just two examples of families who have leveraged their story to reach others.
The Allergy & Asthma Network recognizes the importance of every individual’s story and the power that it holds to make a difference—whether that is the story of a staff member or volunteer whose children have asthma, an allergy or asthma patient and their family members, or a medical professional who has seen too much suffering. It is such different perspectives and interdisciplinary approaches that have helped the Allergy & Asthma Network reach their 30th year as the leading national allergy and asthma related nonprofit. Now, the Allergy & Asthma Network looks forward as they bring additional stakeholders to the table and work on an international perspective, working with other organizations around the world. Winders comments, “It’s important to make those connections. There are other great programs to highlight without duplicating efforts. All the stakeholders can come together for a greater understanding, to have necessary candid conversations.”
Allergy & Asthma Network is the leading nonprofit organization whose mission is to end the needless death and suffering due to asthma, allergies and related conditions through outreach, education, advocacy and research.
Jordan Smith is a recent graduate of NC State, holding her Master’s degree in English with a concentration in Rhetoric and Composition.