Primary Immune Tribune
August 2015
IDF Walk for Primary Immunodeficiency 2015
Time to Lace Up Your Sneakers!

Now is the time to create your team and start fundraising for IDF Walk for Primary Immunodeficiency 2015! This year, we hope to reach the $1 million mark, and your participation will make all the difference—together we can raise awareness, power research and achieve this goal!

Read on for more information including what cities the IDF Walk for PI will be headed to and how to register!


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Pie for PI Challenge
IDF President Takes One for IDF!

Last week, TZ the IDF Zebra got to pie IDF President & Founder Marcia Boyle as part of the new Pie for PI Challenge fundraiser. What’s Pie for PI? During last year’s IDF Walk for Primary Immunodeficiency, two motivated teens, Joseph Maronski of Miller Place, NY and Madison Shaw of Southbury, CT, wanted to raise awareness of PI and help raise money for IDF Walk for PI. Joseph decided to challenge his school to raise money, and once the goal was reached a willing administrator would get a pie in the face. Maddie took her fundraising to the IDF 2015 National Conference, and a willing Marcia Boyle would receive the pie, once Maddie’s goal of $3,500 was reached. Pie for PI was born. Both teens reached their goals. Joseph’s principal took a pie to the face, and just weeks after the National Conference Marcia got her own pie in the face.

IDF wants more schools to take part in the Pie for PI Challenge. This in-school fundraising program has two goals: to educate students about PI and to make a difference by raising funds for IDF. The program can help foster an environment of community service in schools. Is there someone you know who would take a Pie for PI?

Click here to learn more about Pie for PI and to watch the video of TZ pieing Marcia! 


Walk for PI Medical Center Partnerships

Do you know a medical professional who would support IDF Walk for PI? Many of the medical professionals who care for those in the PI community are known for going above and beyond when it comes to supporting their patients, and we now have an opportunity for those who are near one of our walk sites: Medical Center Partnerships. These partnerships are a way for IDF to recognize the hospitals, clinics, and solo practitioners who make a commitment to supporting and promoting the walk in their area. They simply create a team and reach certain milestones, and IDF provides opportunities to showcase their commitment to our community.

If you’re a medical professional who is interested in learning more or if you’re a patient or parent who think that your care team might want to get involved, please e-mail walk@primaryimmune.org. Please note there are a limited number of partnerships per walk site.


Upcoming PI CONNECT Research Webinar
You Voted, IDF Listened!

At the PI CONNECT Live! session at the IDF 2015 National Conference, the top four discussions in the PI CONNECT Research Forum were taken offline and discussed real-time between patients and researchers.

Participants of the live forum nominated their favorite discussions to be the next research webinar topic, and the top two nominations were put out to the entire IDF community for a vote. The votes have been calculated, and the next PI CONNECT Research Webinar will be on Body Temperature and Fever Response, Thursday, October 29, 8 PM ET


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What Do You Think?
Proposed Study on Treatment of GI Symptoms

The Patient Centered Outcomes Research Institute (PCORI) has invited the Immune Deficiency Foundation (IDF), through PI CONNECT, to apply for a grant to conduct a comparative effectiveness study. The application deadline for this study is September 30, 2015, and IDF needs your feedback!

We are seeking input from our community to give us thoughts, opinions and possible concerns about the proposed study. Your input is vital as we seek to work together to improve our study protocol, and the resulting research, which we hope will benefit patient care.

Please CLICK HERE to read the brief study background, methods and recruitment, and then make any comments you may have in the comment section at the bottom of the page.


IDF School Guide: Be Prepared for the Upcoming School Year

Published earlier this year, the Immune Deficiency Foundation School Guide for Students with Primary Immunodeficiency Diseases – Third Edition is a valuable resource to have on hand for the school year. IDF developed this guide to help facilitate effective communication between parents, students and school personnel.

Parents often find it helpful to start the school year with copies for their children’s teachers, school nurse, athletic coaches and other school personnel.

To download or order copies, go to www.primaryimmune.org/idf-publications.

This publication was sponsored by Baxalta US Inc.



Volunteer for IDF!
Fall is Fast-Approaching, Let’s Make This a Season of Service!

IDF needs motivated volunteers who can help build relationships and grow our connections in the PI community. Get started by becoming an IDF Liaison! IDF Liaisons assist us in a variety of ways, from reaching out to healthcare professionals and the public, to representing IDF at health fairs and community events. Learn more about this inspiring opportunity to make a difference. Visit the IDF Volunteer Network page at www.primaryimmune.org/volunteer and complete an application. For more information, contact us at 800-296-4433 or volunteer@primaryimmune.org.


Since You Asked
IDF Question and Answer

Q: I have CVID and I am considering taking a job that will be primarily outdoors. I have read that UV sun exposure can be harmful to the immune system. Is it still harmful with sunscreen? Will I be compromising my immune function with daily UV exposure even with sunscreen?

Q: With the start of the school around the corner, I am worried that the school will not understand my child’s primary immunodeficiency. How can I help my child have a happy and healthy school year?

Click FULL STORY to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols


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