Primary Immune Tribune
July 2015
IDF PI CONNECT Approved for Second Phase of Development of PCORnet, a New National Clinical Research Network

PI CONNECT, IDF's Patient Powered Research Network, has been approved for a three-year funding award by the Patient-Centered Outcomes Research Institute (PCORI) as part of the second phase of the development of PCORnet, the National Patient-Centered Clinical Research Network.

This funding award continues PCORI’s support for PI CONNECT’s participation in PCORnet, a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks.


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President Obama Honors IDF’s Marcia Boyle as a “Champion of Change” for Precision Medicine

Marcia Boyle and Francis S. Collins, MD, PhDOn Wednesday, July 8, Marcia Boyle, President and Founder of IDF was one of nine individuals recognized by the White House as “Champions of Change” for Precision Medicine. This award was given to individuals who are making a difference in transforming the way we improve health and treat disease.

These awardees embody the promise of President Obama’s Precision Medicine Initiative, which was launched earlier this year to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments. The program featured 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 S. Collins, MD, PhD.


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IDF Rally for SCID in Louisiana
Bring Back Newborn Screening!

An energized primary immunodeficiency (PI) community joined forces in Louisiana at IDF’s Newborn Screening for Severe Combined Immune Deficiency (SCID) Rally to raise their voice and ensure that Louisiana babies are not unnecessarily at risk of dying from a curable disease.

Louisiana was the 5th state to begin screening for SCID in 2010 through a pilot program; however, just over 30,000 babies were screened before the state ended the pilot in April, 2011. Since then, little has been done to reinstate the lifesaving process. The rally created a unified voice for the PI community to let Louisiana state officials know that all babies deserve a chance at a healthy life and SCID screening needs to immediately come back to the state.


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IDF Teen Escape in Kansas City, MO, August 15-16

FREE event exclusively for teens, ages 12-18 diagnosed with PI.

The IDF Teen Escape is a weekend opportunity to acquaint teens living with PI with others like themselves. It is filled with fun activities to promote friendship, build leadership skills and develop coping skills. There is even an evening with dinner and gaming at Dave & Buster’s. Medical and life management experts present valuable information to the teens and encourage them to discuss what it means to live with a PI. Separate educational sessions for parents are scheduled, and there are opportunities to network and share ideas.

You can register for this event at https://primaryimmune.org/events-calendar



NEW! Clinical Focus
Subcutaneous Immunoglobulin Replacement

IDF is pleased to present the new issue of Clinical Focus on Primary Immunodeficiencies: Subcutaneous Immunoglobulin Replacement.

As use of subcutaneous immunoglobulin (SCIG) continues to grow in the U.S., more clinicians are using this delivery system for their patients and may not understand all the subtleties and importance of this method and the proper administration. There are also many questions about how to deal with side effects and reactions. This publication offers appropriate guidelines for SCIG, answers commonly asked questions about SCIG and provides in-depth details about the many options for SCIG administration as well.


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Join the IDF Order of the Zebra!

The IDF Order of the Zebra is an elite group of fundraisers whose efforts make an extraordinary impact on the success of IDF Walk for Primary Immunodeficiency. If you set a fundraising goal of $1,000 or more on your personal fundraising page, and reach that goal, you will be inducted into the IDF Order of the Zebra!

Once you’ve set your goal, a member of the IDF walk staff will reach out to you to thank you, and to make sure that you have the resources that you need to join the Order. IDF is committed to helping you reach your goal because of the impact that your efforts will have on the Walk, and IDF’s mission!

Members of the Order receive a variety of benefits including a special item to wear at the walk signifying your Order membership.


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Pie in the Face?

Earlier this year, teens from the PI community created a “Pie for PI challenge” as an in-school fundraising program to educate their peers about PI and provide their classmates with an opportunity to advance IDF’s mission. The challenge revolves around teens engaging their schools to set a fundraising dollar goal where, if the goal is met by the students, a leader from the school (principal, superintendent) will agree to get a pie in the face in support of the PI community.

To help promote this teen-run initiative, Marcia Boyle, IDF President & Founder, agreed that if they could raise $3,500 ($100 for each of IDF’s 35 years) she would agree to be “pie-d” to help show how the program can work. In less than two hours at the recent IDF National Conference, over $1,100 was raised by the teens!

Now that everyone is back from the conference, the teens want to finish off their fundraising. If $2,400 can be raised online through this link by Friday, July 31 at Midnight (EDT), Marcia will take a pie to the face… and will have pictures and video posted afterwards.

Will you help the teens reach their goal? Stay tuned!



Since You Asked
IDF Question and Answer

Q: Is there anything I should be concerned about with my current pregnancy since I have Selective IgA Deficiency?

Q: I have always been registered as an organ donor, but was recently diagnosed with CVID. Can I continue to be an eye, organ, and tissue donor if I have CVID and am receiving immunoglobulin replacement therapy?

Click FULL STORY to see the answer to these questions.


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