Nancy Sander, Founder of the AANMA, Retires after 28 Years
November 19, 2013
By Kristen Stewart
Whoever said one person can’t make a difference clearly hasn’t met Nancy Sander, founder of the Allergy & Asthma Network Mothers of Asthmatics (AANMA).
Though she may not have realized it at the time, the journey that would change her life and the lives of countless others began over 30 years ago. Her daughter Brooke had life-threatening asthma along with environmental and food allergies. Life was a blur of ER visits, doctor appointments, hospitalizations and medical bills.
Nancy found herself juggling responsibilities related to Brooke and her three other children with attempts at research and self-education. “Thirty plus years ago, there was no information,” she remembers. “I would drive to the National Institutes of Health library and search the card files for books and articles.”
All this changed when Brooke was five and they were referred to a research program where they met allergist Dr. Martha White at Georgetown University Hospital. There, they were introduced to tools and a treatment plan along with medications and a daily symptom/medication diary. Nancy went from blindly following what medical experts told her to do to becoming an active, knowledgeable partner in her daughter’s care.
The improvement in their lives was immeasurable and Nancy was anxious to share what she had learned with others. She typed her first newsletter at the kitchen table in 1985 little realizing what she was putting in motion.
Nancy and Dr. White created the AANMA Board of Directors with the mission they still have today — to eliminate suffering and death due to allergies and asthma. Around the same time a reporter saw the newsletter and wrote an article which led to radio and television interviews. Soon volunteers joined them and with the need so great they almost instantly became a national organization.
Nancy served as president of the organization for 28 years until her recent retirement. During that time she worked with everyone from families and medical care providers to members of Congress, state and federal agencies and AANMA staff and the Board of Directors. She received many awards and accolades but none meant more to her than the 2012 Distinguished Service Award from the American College of Allergy, Asthma and Immunology which had previously only been awarded to physicians.
As a means of replacing patient fears about anaphylaxis with strategies for confident living, Nancy and AANMA created Anaphylaxis Community Experts (ACEs). This national award-winning program was developed in partnership with the American College of Allergy, Asthma & Immunology (ACAAI) with sponsorship from Mylan Specialty L.P. The ACE Program seeks to raise awareness, reduce anxiety and eliminate deaths due to anaphylaxis through education, advocacy and outreach.
Nancy also wrote many books (including A Parent’s Guide to Asthma which she plans to update now that she has more time), children’s books and videos and worked as editor-in-chief at two asthma and allergy-related magazines.
She has seen decades of change in her time in the allergy and asthma fields—some for the better, some maybe not so much.
The good news is that answers are out there.
“We have a constellation of symptoms that if well studied by skilled experts (usually board certified allergists) the root cause(s) can be found,” says Nancy. “Over time, with a personalized plan, the patient will see a complete reversal of symptoms and develop skills needed to maintain maximum health with minimum interruption of career, academics, fitness goals or life’s pleasures.”
However, the necessary facts can get lost in a seemingly endless sea of web pages and sound bites. In particular Nancy fears some people may not realize the value of seeing an allergist, believing instead anyone can administer and read allergy tests.
So what’s a patient to do?
First of all, stay focused. For personal treatment seek assistance from board certified allergists and only reference websites recommended by experts or that leave you feeling educated and empowered.
Keep the big picture in mind as well. Support allergy/asthma organizations as much as possible. Donations of any size are welcome.
Also stay abreast of advocacy issues. The U.S. House and Senate have recently passed the School Access to Emergency Epinephrine Act and it is awaiting the President’s signature. This legislation encourages states to adopt laws requiring schools to have “stock” epinephrine auto-injectors on hand that can be used for any student or staff member in an anaphylactic emergency.
While this legislation is a significant step toward making schools a little bit safer for those with severe allergies, it’s important to note many schools already stock emergency epinephrine auto-injectors as part of their preparedness policy. Nancy encourages other schools to follow suit without waiting for the President’s signature.
In addition, as critical as this progress is, it does not decrease the need to be ready. “The legislation which many organizations and individuals have worked hard on for years will increase awareness of the importance of community preparedness but it does not negate individual responsibility,” Nancy emphasizes. “Parents and students must remember to always carry two devices and know how and when to use them.”
Above all, when it comes to living with severe allergies or asthma it’s important to realize it is possible to live a productive and meaningful life. “Bottom line for patients and parents is to set a goal or make a wish list,” Nancy says. “What would life look life if you’re not saddled with symptoms. Then make a list of what is standing between you and achieving those goals. Make an action plan to knock down barriers one at a time. Prioritize according to health first, financial ability second and happiness and quality of life will fall into place.”