Primary Immune Tribune
July 2013
It's Time to Walk for Primary Immunodeficiency!
IDF's New Walks for PI

Officially announced at the IDF 2013 National Conference, Walk for Primary Immunodeficiency is IDF’s new team-based fundraising campaign designed to support the thousands of individuals and families living with primary immunodeficiency (PI) across the U.S.

IDF will host Walk for Primary Immunodeficiency in the following cities this fall. So start a team and raise funds and awareness for PI!

Greater Philadelphia - September 29, 2013 - Penn’s Landing - Philadelphia, PA
Greater Los Angeles - October 19, 2013 - El Dorado Regional Park - Long Beach, CA
Greater Chicago - October 27, 2013 - Cantigny Park - Wheaton, IL

If you do not live near one of those three sites, you can still participate in our Nationwide Virtual Walk, or you can organize a community walk in your hometown. Just e-mail us at walk@primaryimmune.org to learn more.

Help us spread the word so that people all over the U.S. join us to Walk for Primary Immunodeficiency!


Register Now for IDF Teen ESCAPE in Dallas, TX
Hurry! Space is Filling Quickly!
 
IDF Teen ESCAPE  – Dallas, TX
 
IDF invites all preteens and teens, ages 11 to 18, diagnosed with a primary immunodeficiency (PI) to an IDF Teen Escape! This exciting, free event is scheduled on August 10 – 11, 2013 at The Westin Dallas Park Central in Dallas, TX.
 
The IDF Teen Escape weekend is an opportunity to acquaint preteens and teens diagnosed with PI with others like themselves. This weekend is filled with fun activities designed to promote friendship, build leadership skills and develop coping abilities. Age appropriate sessions will be presented by medical and life skills experts. Attendees will discuss what it means to live with a PI with other participants and focus on transition and advocacy issues. There will be separate parent sessions that offer opportunities for parents to network and share ideas.

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IDF 2013 National Conference
Connects Hundreds Living with PI, Makes History on Capitol Hill

More than 1,200 people gathered in Baltimore, MD for the Immune Deficiency Foundation 2013 National Conference, June 27-29. It is the only national meeting in the U.S. specifically for the primary immunodeficiency (PI) community. Patients and families received helpful information about living with PI and connected with great people from all over the world, including 44 states, Guam, France, South Africa, the United Kingdom, Canada, Italy, Germany, Australia, Israel, Belgium and Argentina. Many attendees remarked that it was the best IDF conference!


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IDF Patient & Family Handbook, 5th Edition
Now Available!
IDF is proud to announce the availability of the expanded, updated and revised IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, 5th Edition! The first Handbook was developed in 1987 and was the most comprehensive reference for patients with primary immunodeficiency (PI). Since then, it has gone through four revisions, it is translated in several languages, and it has grown into the remarkable 33 chapter reference that it is today.
 
The 5th Edition of the Handbook is 50% larger than the last edition with 11 new chapters and is full of helpful information about the diagnosis and treatment of PI and life management.
 
Thank you to our editors R. Michael Blaese, MD; Francisco A. Bonilla, MD, PhD; E. Richard Stiehm, MD; and M. Elizabeth Younger, CPNP, PhD for all your hard work. And thank you to the 45 Handbook contributors as well!
 
This publication was made possible by an educational grant from Baxter Healthcare Corporation.
 
CLICK HERE to visit the IDF Patient & Family Handbook section of the IDF website, or request a hardcopy today at 800-296-4433 or idf@primaryimmune.org.


New States Screening All Newborns for SCID
Utah and Pennsylvania

IDF advocates in Utah and Pennsylvania gave testimony and contacted state health officials in support of Severe Combined Immune Deficiency (SCID) screening over the course of the past few years and now their work has paid off. On July 1, 2013, both states were added to the list of states currently screening for SCID. Thanks to these amazing advocates throughout the country, SCID newborn screening is now a reality in 15 states! CLICK HERE to read more about this monumental news.



Since You Asked
IDF Question and Answer
 
Q:  It seems every year I am offered different insurance plans. Along with this change often comes an increase in cost. How can I make sure I am doing everything I can to keep my healthcare costs down?
 
Q:  I am currently going through testing to diagnose or rule out a primary immunodeficiency disease. What is the correct protocol to determine if I would build immunoglobulin (Ig) immunity to the tetanus vaccine? How long after the shot should I be tested?
 
Click "FULL STORY" to see the answers to these questions.

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