Primary Immune Tribune
February 2015
Register Now for the IDF 2015 National Conference
Scholarships Available

Join the Immune Deficiency Foundation (IDF) in New Orleans for our eighth national conference at the Hyatt Regency New Orleans on June 25-27, 2015. From healthcare professionals to specialized life management experts, you won't want to miss this special opportunity to learn from those on the cutting edge of research and treatment. Visit www.idfnationalconference.org to learn more, or to register today!

And for individuals and families that have financial limitations, we have two ways to help curb some of the costs: (1) Apply for a scholarship! We have a limited amount of scholarships to cover the hotel room costs. Find complete details at http://idfnationalconference.org/scholarships. Or (2) By registering for the 2015 IDF Walk for Primary Immunodeficiency, and raising $1,000 or more prior to the conference you will earn a refund of your conference registration fee, and be recognized as one of the walk’s top fundraisers as a member of the IDF Order of the Zebra. Find out how to get started at http://idfnationalconference.org/idf-order-of-the-zebra.


Wanted: Great Silent Auction Items!

The 2015 National Conference will once again feature the ever-popular THINK ZEBRA! Silent Auction to raise funds in support of IDF’s mission. A new feature will be that instead of the old pen-and-paper bidding, you’ll be able to bid from your phone or mobile device… no matter where you are at the conference or around the country.

To make this event a success, we need your help in securing items that (1) people will want to bid on and that (2) you can easily ship to IDF. If you have a great item to donate, please CLICK HERE to go to our online site. If you have any questions, please e-mail development@primaryimmune.org.


IDF ePHR Challenge
Sign Up Today!

The Immune Deficiency Foundation (IDF) challenges you to POWER UP YOUR HEALTH with IDF ePHR, the electronic personal health record designed for the primary immunodeficiency (PI) community. IDF ePHR features innovative tools to help you improve your health and organize your info—even on the go!

The first 1,000 people to sign up for IDF ePHR in 2015 will receive a free portable electronic charger, and you’ll also be entered to win one of three incredible prizes:

  • iPad® Air 2, 16 GB
  • iPad® Mini 3, 16 GB
  • $100 American Express® Gift Card

The drawing will be held during National Primary Immunodeficiency Awareness Month and World PI Week, April 29, 2015. Winners will be announced via IDF social media, and winners will receive an e-mail. See official rules and further details at www.primaryimmune.org/challenge.


Join the PI CONNECT Research Forum
Take Your Seat at the Research Table

When you create an ePHR account and consent into PI CONNECT, you receive exclusive access to the PI CONNECT Research Forum. The purpose of the Research Forum is to provide you with the most up-to-date research information on primary immunodeficiency diseases (PI). The Forum also brings together patients and healthcare professionals to drive research on the treatment and management of PI, such as which antibiotic options are best used to prevent bronchitis, how different dosing strategies compare, or what laboratory studies can predict autoimmune diseases. Patients and scientists together can mold the direction of research to ensure that we all get to benefit from the best treatment information available.

Join the conversations happening right now:

  • Autoimmunity and inflammation in X-linked Agammaglobulinemia
  • Secondary complications with CVID
  • Prophylactic antibiotics and B cell deficiencies
  • And more!

For more information, please contact us at info@idfephr.org.


IDF Walk for Primary Immunodeficiency
Raising Awareness. Powering Research.

Join us in 2015 for IDF Walk for Primary Immunodeficiency!

Whether you’re new to the PI community or have been part of it for decades, help us reach our 2015 goal of raising one million dollars to help improve the lives of people with PI.

One of the most critical factors to reaching our million-dollar goal is creating lots of teams for each walk. Our teams raise an average of $1,000 each, so it’s essential to have as many teams as possible.

There is no cost to participate in the walks, although we hope every walker will help us raise funds in support of our goals. Our walkers raise $100 on average, so each walker who raises $100 or more will receive a free 2015 IDF Walk for PI t-shirt. There are a variety of other incentives and recognition opportunities for those who raise more, including induction into the IDF Order of the Zebra for individuals who raise $1,000 or more.

2015 Walk Locations:

Boston, Boston Common – October 4
Cleveland, Wade Oval – October 4
Fort Lauderdale, Huizenga Plaza – November 22
Greater Chicago, Cantigny Park – October 25
Houston, Discovery Green – November 15
Los Angeles, Tongva Park – November 8
Minneapolis, Minnehaha Park – October 11
New York City, Foley Square – October 25
Philadelphia, Penn's Landing – October 18

Registration will open soon! If you don’t live near one of our official sites, you can join our Virtual Walk program which allows you to support the Immune Deficiency Foundation from your own hometown! For more information, visit www.primaryimmune.org/walkforpi


IDF Academic Scholarship Programs
Deadline to Apply - April 15

The Immune Deficiency Foundation is honored to award scholarships to students living with primary immunodeficiency diseases who plan on completing their post-secondary education.

The Eric Marder Scholarship Program is open to patients with a primary immunodeficiency as classified by the World Health Organization and is intended for undergraduate students attending or entering college or a technical training school.

The Varun Bhaskaran Scholarship Program is for undergraduate or graduate students living with Wiskott-Aldrich Syndrome (WAS).

The online application for both scholarship programs requires uploading the following documentation:

  • Autobiographical essay
  • Letter from an immunologist verifying your primary immunodeficiency disease
  • College acceptance letter
  • References from two people who are not relatives
  • Free Application for Federal Student Aid (FAFSA) NOTE: The FAFSA needs to be for the 2014 tax year. A FAFSA from a previous year will NOT be accepted.

The online application for both scholarship programs will be accepted from February 1st through April 15th on the IDF website: http://primaryimmune.org/services/idf-academic-scholarship-programs/. The scholarships will be awarded in June.


Since You Asked
IDF Question and Answer

Q: Is there any research to determine the efficacy of Beta 1,3 D Glucan supplements in improving health, particularly regarding enhanced immune function?

Q: I was just wrongfully suspended from my job. I am a nurse who has CVID and I asked for a reasonable accommodation to not work on certain units if possible. I was told if I can't work on all units then I can't work. I am not sure what to do. Who can I call for help?

Click “FULL STORY” to see the answer to these questions.


[FULL STORY]



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