By Jon Meoli, firstname.lastname@example.org
9:38 AM EDT, May 14, 2013
When 16-year-old Towson resident Aaron Sanzenbacher and his mother, Jenny Michalak, received Aaron's diagnosis with an immune deficiency, Aaron said his mother's reaction was, "What's that?"
More than 30 years ago, Marcia Boyle thought the same thing when she received a similar diagnosis for her son, John. And it's only because of the organization she founded all those years ago that Aaron and his mother had somewhere to turn.
"I'll tell you what really motivated me the most — my son has a disorder that no one has heard of and there's no organization advocating for him," said Boyle, founder and now president of the Immune Deficiency Foundation. "I didn't know what the issues would be, but I knew they would be health insurance, access to care and there's got to be a strong organization that will be there for primary immune deficiency."
Now, after more than 30 years of work and advocacy by the foundation, families like Aaron's have at their disposal a network of caseworkers and specialists, as well as countless resources on immune deficiencies.
Immune Deficiency Foundation has grown since its incorporation in December 1980, when Boyle started it up in her kitchen in Columbia.
Though the organization had a grassroots beginning, the organization never sought to have a specific local presence. They serve such a niche audience that many in Towson are unaware that the foundation occupies the entire third floor at 40 W. Chesapeake Ave.
"We were never a local organization, just there for Maryland or the Columbia-Baltimore area," Boyle said. "From the beginning, we were a national organization."
After incorporating in 1980, the group created pamphlets and educational brochures, and hosted educational meetings nationwide before their biggest undertaking — creating a comprehensive patient-family handbook, which has since expanded to include information on 185 disorders.
Most recently, the foundation celebrated a victory on its advocacy for at-home intravenous immunoglobulin — an antibody injection for those whose bodies can't create its own — when President Barack Obama signed the IVIG Medicare Access Act on Jan. 10.
The act allows patients on Medicare to receive their immunoglobulin injections at home instead of in a hospital.
"When you need your immunoglobulin, your immune system is at its lowest valley," Boyle said. "To have to go into a hospital where you find all sorts of disease and infection is not the best for your care."
It's that mix of nationwide advocacy and support for patients in their own back yard that makes the foundation unique. For Michalak and her family, the foundation's resources were helpful from the start.
"I searched for information and the website popped up" Michalak said. "I was looking through the resources, and I've referred back to the website and resources periodically throughout the years."
Aaron's condition has worsened since sixth grade, when he was diagnosed with selective immunoglobulin A (IgA) deficiency — meaning he lacks antibodies to fight respiratory and digestive infections.
"I had some absences in elementary and middle school, but last year, it picked up a little bit and then, halfway through this year, it got really bad," Aaron said. "I've been missing entire weeks of school. I was just out a month with mononucleosis."
His illness keeps him from his duties as a euphonium, guitar and bass player in the school band, and hampers his social life, he said.
When he is feeling well enough for school, his spare time is more likely spent catching up on work from his classes — a mix of honors, AP and Gifted and Talented courses.
Last month, the family and foundation were encouraged that there is progress being made setting up an individual education plan for Aaron, which allows teachers to make accommodations regarding his schoolwork and testing.
But as they continue to monitor Aaron's medical situation, Michalak said the family will continue to turn to the foundation
"There are different things that happen throughout the life of somebody that has (an immune deficiency) that can get progressively worse," Michalak said. "The organization has been great about helping us out that way."