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.
To view the original version on PR Newswire,
visit:http://www.prnewswire.com/news-releases/president-obama-honors-idfs-marcia-boyle-as-a-champion-of-change-for-precision-medicine-300109967.html
SOURCE Immune Deficiency Foundation