TOWSON, Md., July 7, 2015 /PRNewswire-USNewswire/ -- On Wednesday, July 8, Marcia Boyle, President & Founder of the Immune Deficiency Foundation (IDF), will be one of nine individuals recognized by President Barack Obama at the White House as "Champions of Change" for Precision Medicine, which honors individuals doing extraordinary things to empower and inspire members of their communities.
Marcia and her fellow Champions are helping to transform the way Americans improve health and treat disease. She has devoted her life to helping people diagnosed with primary immunodeficiency diseases (PI), which affect approximately 250,000 Americans. After her son was diagnosed with X-Linked Agammaglobulinemia, a primary immunodeficiency disease, Marcia and her husband John, along with another family and her son's immunologist, created a national patient organization for patients and their families, formally incorporating IDF in 1980.
Under Marcia's leadership, IDF has developed national conferences and patient meetings throughout the U.S. that provide meaningful in-person educational opportunities for individuals and families living with primary immunodeficiency. IDF's full spectrum of educational publications has been a hallmark of their efforts; these publications have been heralded as the best patient resources about primary immunodeficiency in the world. To provide easier access to more people, IDF recently developed an electronic personal health record (IDF ePHR) specifically for the primary immunodeficiency community that allows patients with these complex disorders to better track and manage their health. As a PCORI grant recipient, IDF created PI CONNECT, the IDF Patient-Powered Research Network, bringing together patient data from IDF ePHR with clinical data from the United States Immunodeficiency Network (USIDNET) patient-consented registry, which is a program of IDF and is funded in part by the National Institute of Allergy and Infectious Diseases (NIAID) and the National Institutes of Health (NIH). Bringing together this information holds great promise to provide researchers further insights about the diagnosis and treatment of PI, ultimately helping to improve quality of life for patients. Marcia remains a steadfast champion for those living with PI through IDF's ongoing advocacy, education and research initiatives.
The Champions of Change ceremony will occur on Wednesday, July 8 at 2:00PM ET. Watch live at www.whitehouse.gov/live. The program will feature remarks by Secretary of Health and Human Services Sylvia Mathews Burwell; Senior Advisor to the President Brian Deese; and Director of National Institutes of Health Francis Collins.
Learn more about the White House Champions of Change program at www.whitehouse.gov/champions. For more information about the Precision Medicine Initiative, visit www.whitehouse.gov/precision-medicine. Follow the conversation at #WHChamps.
The Immune Deficiency Foundation is the national non-profit patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with PI through advocacy, education and research. There are approximately 250,000 people diagnosed with PI in the U.S., and thousands more go undetected.
SOURCE Immune Deficiency Foundation