Primary Immune Tribune
May 2015
Early Registration Discount Ends May 15
Only 3 Days Left to Save $$!

Join IDF in New Orleans on June 25-27, 2015 as we celebrate our 8th National Conference and the gathering of the PI community. The Conference will be packed with educational sessions and activities that you won’t want to miss, so be sure to register in the next 3 days to join us at the discounted rate! The early registration discount ends May 15! For more information, visit www.idfnationalconference.org


THINK ZEBRA! Silent Auction
Register at www.BiddingforGood.com/idf

You’ll learn so much at the conference, but when it comes to having fun – you can’t beat the THINK ZEBRA! Silent Auction. The auction is filled with great items that you can bid on, including weekend getaways, autographed memorabilia, and LOADS of fun zebra-themed items!

The THINK ZEBRA! Silent Auction has received several tour packages from the New Orleans Steamboat Company. If you are headed to the IDF 2015 National Conference in New Orleans the Steamboat Natchez Jazz Cruise might be a perfect bid for you!

We are still accepting donations! Do you have a famous friend, a lonely vacation home, or even better a creative, resourceful mind? Email development@primaryimmune.org to submit your auction item today!


IDF Teen Escape Weekends
Registration is Now Open!

July 25-26, 2015
Linthicum Heights, MD

August 15-16, 2015
Kansas City, Missouri

Join us for this empowering, FREE event exclusively for teens ages 12-18 diagnosed with primary immunodeficiency (PI) diseases!

The IDF Teen Escape is a weekend opportunity to acquaint teens diagnosed with a PI with others like themselves. This weekend is filled with fun activities designed to promote friendship, build leadership skills, develop coping skills and an evening with dinner and gaming at Dave & Buster’s. Medical and life skills experts present valuable information to the teens as well as encourage them to discuss what it means to live with a PI with other participating teens. Separate sessions for parents are scheduled that offer education and an opportunity to network and share ideas. Learn more at
http://primaryimmune.org/programs/idf-teen-escape or register for either of these events at https://primaryimmune.org/events-calendar/.


IDF ePHR and PI CONNECT Update
A Busy Month for IDF ePHR and PI CONNECT

First PI CONNECT Research Webinar About CVID
On April 23, IDF hosted the highly anticipated webinar Less Common Aspects of Common Variable Immune Deficiency (CVID). Kathleen Sullivan, MD, PhD, Children’s Hospital of Philadelphia; Charlotte Cunningham-Rundles, MD, PhD, Mount Sinai School of Medicine; and, Kenneth Paris, MD, MPH, Louisiana State University Health Sciences Center and Children's Hospital, presented. The sessions were engaging, as was the Q&A portion, where the presenters fielded patient posed questions. The live webinars are available to those who join the Research Forum, which is part of PI CONNECT. Click here to view the recorded version of the first webinar.

IDF Welcomes Additional Members to PI CONNECT Governance Committee
IDF welcomes six new patients and caregivers to the PI CONNECT Governance Committee, a group that advises policies, as well as guides patient engagement for PI CONNECT, the IDF Patient-Powered Research Network. The committee consists of clinicians, members of the IDF Board of Trustees and the IDF Medical Advisory Committee, patients and caregivers from the PI community, and representatives of the United States Immunodeficiency Network (USIDNET) and IDF. Click here to read more.

PI Community Steps Up to Take IDF ePHR Challenge
IDF challenged the PI community to “Power Up Your Health” by joining IDF ePHR, the electronic personal health record. Free portable electronic chargers were offered to those who created accounts, and they were entered into a drawing for prizes. Over 1,000 people signed up and created accounts! We’d like to congratulate our Challenge winners: Carol Ambrosino – 1st Prize iPad Air 2, 16 GB; Saundra Palmer – 2nd Prize iPad Mini 3, 16 GB; and, Karen Malatesta – 3rd Prize $100 American Express gift card. Click here to read more


Name the IDF Zebra!

IDF launched the THINK ZEBRA! campaign in 2009, and since then thousands of individuals and families living with PI identify with the zebra. With a big grin and bold stripes, the IDF zebra has become a celebrity in our community, but it’s time to give the zebra a name!

We want the entire PI community to take part in naming the zebra! Through the month of May, we will be accepting name suggestions. Read complete details by visiting: http://primaryimmune.org/name-the-idf-zebra/


Raise More, Earn More
Join the IDF Walk for PI!

Get your shoes laced up and join the IDF Walk for PI in 2015! We need you to help us reach $1 million. Here are six reasons to get moving for the IDF Walk for PI! All walkers raising $100 or more receive a free Walk for PI t-shirt at the walk.

Raise $250 = Receive a Walk Hide-away Sports Bottle
Raise $500 = Receive a Walk Lunch Tote
Raise $1,000 = Receive a pair of Walk Headphones, and become a member of the IDF Order of the Zebra. If you raise it by June 22 you will ALSO receive a refund of your 2015 IDF National Conference registration.
Raise $2,500 = Receive a Walk Knit Hoodie
Raise $5,000 = Receive a Walk Serenity Lounge Chair

All you need to do is register!

2015 Sites: Boston, Charlotte, NC - Community Walk, Cleveland, Greater Chicago, Fort Lauderdale, Houston, Los Angeles, Minneapolis, New York City, Philadelphia, and Nationwide Virtual Walk!


IDF Remembers
Memorial Plaque at IDF

IDF is currently adding names to a memorial plaque to help us remember the patients, medical professionals, and others that the PI community has lost over the years. This plaque will occupy a place of honor in IDF’s office to ensure that they are never forgotten.

The plaque will feature small nameplates of those who are to be memorialized. If you would like to submit a name to be included, please e-mail that person’s first and last name along with a little about their life to development@primaryimmune.org by May 31. There is no charge to have a name added to the plaque.


Since You Asked
IDF Question and Answer

Q: I have CVID. My husband was going to get the shingles vaccine but was told that it might be risky or possibly contagious to me. What can IDF tell me about this?

Q: I have a new insurance plan which dictates that I use a certain specialty pharmacy. This pharmacy will not provide me with my prescribed product and suggested that I use a different product. I decided to use a different pharmacy, but now I am paying all of these out-of-network charges and there is no limit on the annual the out-of-pocket maximum. This does not seem fair! What can I do?

Click FULL STORY to see the answer to these questions.


[FULL STORY]



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