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How We Celebrated National Primary Immunodeficiency Awareness Month and World PI Week

The Immune Deficiency Foundation (IDF) celebrated National Primary Immunodeficiency Awareness Month this April, in partnership with World PI Week, April 22-29.

IDF promoted Awareness Month and World PI Week in all communications, including the IDF website, newsletter, e-newsletter and social media. Many members of our community shared their stories and signed the World PI Week Call to Action at, which asks governments around the world to take steps to understand, diagnose and manage primary immunodeficiency diseases in their respective countries.

IDF President & Founder Marcia Boyle received the inaugural PSI President's Award from Representative Doris Matsui.

During World PI Week, IDF had the opportunity to celebrate two special occasions. On April 24, Marcia Boyle, IDF President & Founder, received the inaugural President’s Award from the Patient Services, Inc. (PSI) for her leadership in the patient advocacy community. The following evening, IDF hosted a reception in Washington, D.C. to thank all those who helped the Medicare IVIG Access Act become law, including Representatives Doris Matsui and Kevin Brady.

Also in April, Marcia Boyle appeared on Baltimore TV station WBAL-TV 11 , explaining primary immunodeficiency diseases and the work of IDF. John Boyle, IDF Director of Development, appeared on Comcast Newsmakers in Maryland to share his story and raise awareness. IDF reached out to healthcare professionals in Maryland by advertising in Maryland Physician magazine.

IDF hosted patient meetings across the country throughout the month of April, including Little Rock, AR, Huntsville, TX. Tampa, FL, Omaha, NE, Winston-Salem, NC, and Madison, AL. By traveling to regions throughout the country, IDF can further promote awareness and offer valuable information about the treatment and management of primary immunodeficiency diseases from healthcare and life management experts.

CSL Plasma Center - Omaha, NE

Plasma centers all over the U.S. raised awareness during April through the IDF Plasma Center Partners Program. Some centers got very creative with their fundraising activities, including bake sales and IDF’s THINK ZEBRA! or IDF Blue Jeans for Healthy Genes campaigns, during which staff and plasma donors are invited to donate money to support IDF programs and by personalizing and posting small paper cutouts of a zebra or blue jeans throughout the centers.

IDF Volunteer Bill Hindin

In addition to press coverage, patient meetings and the plasma center program, IDF Volunteers spread awareness and raised funds in their local communities. IDF provided them with materials and suggestions, and the volunteers got to work!

IDF Volunteer Bill Hindin of New York received proclamations from the State of New York as well as the City of New York, declaring April 2013 National Primary Immunodeficiency Awareness Month. IDF Volunteer Joanna Tierno of Staten Island, NY participated in blood drives to spread awareness of primary immunodeficiency diseases as well as to bring attention to the ongoing struggles of her community in the wake of Hurricane Sandy with the Midland Avenue Neighborhood Relief. She was featured on the local news and in the advertisements for the NYC Blood Center. Joanna also received a proclamation from the State of New York.

Even teen volunteers got involved. IDF Teen Council member Emma Bozarth of Macomb, IL organized her 4th Annual Zebra Game with the help of her family and her softball team, and she was featured on a local TV station for her work. Bryan Jirsa of Joppa, MD, also a member of IDF Teen Council, received a proclamation from his local Harford County Executive David Craig, spoke with donors and staff at a local plasma center, and presented information about primary immunodeficiency diseases to his health class.

Madison Shaw

Eighth-grader Madison Shaw of Southbury, CT organized a Team Zebra 5k Walk-a-thon/Fun Run, raising more than $4,000, and she has other four other events planned in the coming months to continue her work. Aaron Sanzenbacher of Towson, MD, a 16-year-old with Selective IgA Deficiency, shared his story in a Baltimore Sun article.

Overall, National Primary Immunodeficiency Awareness Month and World PI Week 2013 were great successes because more people learned about primary immunodeficiency. With the help of our community, especially our great volunteers, we can promote awareness all year long!

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