Primary Immune Tribune
March 2015
IDF 2015 National Conference
New Sessions, Same Amazing Experience!

The Immune Deficiency Foundation (IDF) will host the IDF 2015 National Conference at the Hyatt Regency New Orleans, June 25-27, 2015. Individuals and families living with primary immunodeficiency diseases (PI), clinicians, life management professionals, industry representatives and other caring folks will gather for three days to learn, share ideas and discover the latest about PI.

Attendees can choose from 40 healthcare and life management sessions conducted by dedicated experts. There will still be familiar disease specific sessions and helpful ideas on how to manage your health, however, every IDF National Conference offers something new, so don’t miss this year's new sessions including:

  • Complementary and Alternative Medicine
  • Young Adults - Life Beyond High School
  • Practical Q&A on the Administration of Ig Therapy
  • Taking Care of Ourselves: Women Getting It Done!
  • For Men Only
  • Nutrition and Immunity

From learning about the advancements in the diagnosis and treatment of PI, to gaining skills needed to manage healthcare, the IDF 2015 National Conference offers valuable experiences for everyone!

Learn more and register online at www.idfnationalconference.org.


Have You Taken the IDF ePHR Challenge?

We challenge 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 on 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

If you signed up already, thank you! Be sure to let other patients with PI know how easy it was and use #idfephr when you share on social media.



It’s Time to Promote Awareness!
April is National Primary Immunodeficiency Awareness Month, World PI Week is April 22-29

April is National Primary Immunodeficiency Awareness Month! Join IDF, in partnership with World PI Week celebrated April 22 to 29, to promote awareness of primary immunodeficiency diseases (PI) in your community. To get you started, below are ways you can help. Have fun, be creative and help increase awareness of primary immunodeficiency!

Get the Word Out and Help Others with the IDF “Learn More” Poster
IDF developed an Awareness Poster to lead patients and family members to IDF to use our services and innovative materials. It’s a great poster to take to the office of your primary care physician, immunologist and other healthcare professionals. Click here to download the new Awareness Poster.

Use Social Media
Log into IDF Friends and connect with others in your area to organize your awareness activities. Follow IDF Facebook, Twitter and Instagram. Use the hashtags: #primaryimmune, #PIawareness, and #WPIW.

For more ways to help promote awareness, go to www.primaryimmune.org/awareness.



2015 IDF Walk for Primary Immunodeficiency
Registration is Now Open!

Registration is now open for all 2015 IDF Walk for Primary Immunodeficiency walk sites!  Whether you’re new to the PI community or have been part of it for decades, help us reach our 2015 goal of one million dollars to help improve the lives of people with PI.

Register Today:
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
Virtual Walk! – Now until December 31

We also have a need for people to help us plan and lead the walk. If you are interested in any of the below areas, please CLICK HERE to complete the volunteer application. Areas for involvement include:

  • Team Formation – Invite previous Walk Teams Captains to return, as well as recruit new ones.
  • Medical Community Outreach – Promote 2015 IDF Walk for Primary Immunodeficiency to medical offices and facilities in your community, especially those located in close proximity to Walk sites.
  • Team Management – Educate the Walk Team Captains on all processes associated with the Walk and how to lead their teams to be as successful as possible.
  • Logistics – Work in close conjunction with the IDF staff to assure the logistics of the walk are properly planned and executed. 

Please email walk@primaryimmune.org or call 800-296-4433 with any questions.

Still Accepting Great Silent Auction Items!

Thank you to those who have already contributed an item to the THINK ZEBRA! Silent Auction at the 2015 National Conference. We are excited that our online auction site is already generating submissions that will help us raise funds in support of IDF’s mission. To make this event as successful as possible, we need your help in securing even more items that (1) people will want to bid on and that (2) you can easily ship to IDF or bring to the conference (if you’re going). If you have a great item to donate that has a value of at least $25, please CLICK HERE. If you have any questions, please e-mail development@primaryimmune.org. Thank you!



“Living with CGD as a Mom”
Blog Post Shares Mom’s Perspective

Last month, IDF launched a website dedicated to the individuals and families living with CGD, www.LivingwithCGD.org. The site highlights the latest information regarding research and treatment, and shares stories of patients and families.

One mom wrote a heartfelt blog post about the diagnosis of her young son. In the post she said that after receiving her son’s diagnosis, “my life changed that day. I had never heard of the condition before, but at that moment, I began ‘living with CGD.”

While the family remains cautious, their son is like most rambunctious two-year-old boys—he’s always on the go and loves to play soccer, go on train rides, play with his big sister and even help make blueberry smoothies. Click here to read the entire blog post.

Would you like to share your story of living with CGD? Contact us at info@primaryimmune.org.

Join IDF for a special two-day CGD Symposium at the IDF 2015 National Conference. Click here for more information.



IDF Academic Scholarship Programs
Application Deadline 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: My son has CVID and has not been doing well lately as he has other autoimmune issues. All of this is a lot to handle and I feel I need to be able to deal with this better for my son. How do other parents navigate this caregiver process?

Q: I received an e-mail about the new IDF ePHR and was wondering, if I had a previous IDF eHealthRecord account, why should I use new IDF ePHR? And what happens to all my previous information?

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


[FULL STORY]



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