Primary Immune Tribune
April 2013
Early Registration Deadline Extended
Last Chance to Save

The IDF 2013 National Conference early registration deadline has been extended to Saturday, May 4. Take advantage of this opportunity to save $50 on the registration fee if you register by May 4. CLICK HERE to register now! For questions about registration, e-mail conference@primaryimmune.org, or call 414-918-3022.



IDF Celebrates National Volunteer Week
National Volunteer Week -- April 21-27, 2013

In honor of National Volunteer Week, April 21-27, 2013, IDF recognizes our dedicated volunteers! IDF has a nationwide network of volunteers committed to increasing awareness of primary immunodeficiencies in their local communities. Many serve as peer support volunteers to offer encouragement and understanding to others as they live with a primary immunodeficiency disease. Others provide information on local resources, host educational meetings, advocate for public policy, and often organize fundraising events throughout the country. Thank you to each and every volunteer for sharing your time and talent—you are absolutely vital to the work of IDF!

CLICK HERE to read more.



World PI Week

IDF is joining the efforts of organizations across the globe to promote awareness of primary immunodeficiency diseases during World PI Week, April 22-29. IDF is participating in worldwide initiatives to improve the recognition, diagnosis, treatment and quality of life of people with primary immunodeficiency diseases, and the IDF community can get involved!  Patients, family members and friends can help spread global awareness as well. Click FULL STORY to see how you can get involved.


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Take Action!
Newborn Screening Saves Lives Reauthorization Act Introduced

As we mark the 50th anniversary of newborn screening in the United States, the Newborn Screening Saves Lives Reauthorization Act “(H.R. 1281) has been introduced to reauthorize critical programs that provide assistance to states to improve and expand their newborn screening programs. The current law has sunset, or expired, and a new law needs to be passed to keep newborn screening policy efforts at the federal level to continue.

CLICK HERE to read more about the issue, and take action for newborns! Urge your Representative to support HR 1281, the Newborn Screening Saves Lives Reauthorization Act.



THINK ZEBRA! Silent Auction
Get Creative and Donate!

The THINK ZEBRA! Silent Auctions at the 2009 and 2011 National Conferences were popular events, enjoyed by conference participants who had a great time finding treasures! Hundreds of unique donated items raised tens of thousands of dollars for IDF. So we are going to do it again! Plans are underway for the THINK ZEBRA! Silent Auction for the 2013 National Conference in Baltimore, MD.

Please support the event with the donation of an auction item. Click FULL STORY below to see some donationa ideas. We look forward to your creative contributions!


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Earn Free Hotel Nights at the National Conference
THINK ZEBRA! 2013

IDF is pleased to announce the online launch of THINK ZEBRA! 2013, our fundraising and awareness initiative. This year, for the first time, you can participate in THINK ZEBRA! online and easily raise funds and promote awareness through your very own Personal Campaign Page. Creating a Personal Campaign Page only takes a few minutes. Once it's up and running, you can then e-mail friends, neighbors, and family members about your connection to IDF, and start raising money. Those who fundraise on behalf of IDF through the THINK ZEBRA! campaign may be eligible for the following prizes:

  • Raise $1,000* and you will receive reimbursement for your registration fee for the IDF National Conference.
  • Raise $2,500 $3,499* and you will receive one free hotel night at the Baltimore Hilton during the Conference, in addition to the reimbursed registration fee.
  • Raise $3,500 or more* and you will receive three free hotel nights at the Baltimore Hilton during the Conference, in addition to the reimbursed registration fee.

To try out your Personal Campaign Page, just visit http://primaryimmune.org/take-the-zebra-challenge/zebra. If you have any questions, please call 800-296-4433 or e-mail amayberry@primaryimmune.org.



Cupcake Wars Winner Helps Spread Awareness
La Cakerie Celebrates Primary Immunodeficency Awareness Month

Right across the street from IDF’s office sits La Cakerie. Founded by Food Network’s Cupcake Wars winner Jason Hisley, the bakery is the go-to spot for IDF staff members who are looking for an afternoon pick-me-up. La Cakerie has graciously agreed to celebrate National Primary Immunodeficiency Awareness Month by selling special zebra cookies for $3 through Saturday. Proceeds of the cookie sales will go to support IDF.

Creating partnerships like this are a fun way to spread awareness about primary immunodeficiency diseases, build connections within your community, and raise funds that will help IDF pursue its mission. If you have an exciting partnership in your community, please let us know! If we can, we’ll mention it on the IDF Facebook page or Twitter account. And if you live in the Greater Baltimore area, swing by Towson this week to see our friends at La Cakerie. Remember: the calories don’t count if they’re for a good cause!



Since You Asked
IDF Question and Answer

Q:  How does Common Variable Immune Deficiency (CVID) affect blood tests interpretations that use immunoglobulin as the base? I have been tested for several autoimmune disorders, as well as Epstein-Barr and HHV-6. But, I am confused; if my body does not produce enough immunoglobulins, am I going to get false negatives on these tests? If there is a positive test, does it mean that the results should be given more consideration even if it is a low positive?

Q:  What is the difference between traditional Medicare Part B and a Medicare Advantage Plan and how do they cover immunoglobulin (Ig) therapy?

Click "FULL STORY" to see the answers to these questions.


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