One Mother’s Fight Against PI Has Now Benefited Thousands

Ellicott City, Maryland | President Marcia Boyle has spent decades advocating for people with immune deficiencies. Her own son was diagnosed more than 30 years ago when he was an infant, and the prompt diagnosis literally saved his life. A grateful Boyle founded the Immune Deficiency Foundation (IDF) to improve diagnostic methods, treatments, and help those with primary immune diseases and their families have a better quality of life.

Primary immunodeficiency (PI) diseases are actually a group of 250 chronic disorders that occur when the body cannot fight off infection on its own.

IDF provides educational resources at no cost in the form of booklets, and it hosts events to raise awareness on PI.

Another effort spearheaded by Boyle is the electronic medical records transition. Through her advocacy, digital records are being made available not only for patients, but for research purposes as well.  And if that’s not enough, she is currently part of a five-year campaign seeking to have all newborns routinely tested for severe combined immunodeficiency.

It comes as no surprise that, recently, she was honored by the White House as a Champion of Change in Precision Medicine!

Friends, colleagues, and family say that, while Boyle appreciates the award, she is happiest that the award is boosting IDF’s visibility around the world.

IDF has 35 employees, and after 12 years of volunteering, Marcia Boyle is now the salaried president of the organization, which has offices in Towson, Maryland. She said, “It’s not enough to educate. We need to bring about real change.”

Hop on over to The Baltimore Sun to read about her White House visit went and an actual picture of her (darn copyright laws)!

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