Primary Immune Tribune
July 2016


It’s Hot Outside! How Can Heat Affect SCIG?
Tips to Keep Your Ig Safe During the Summer

Summer is here, and the weather is hot! This time of year, IDF receives questions about safe temperatures for your subcutaneous immunoglobulin. How hot can it get? Has the drug been affected if it sits out on your front porch in summer time heat?

The IDF Nurse Advisory Committee has put together some helpful tips to address your concerns. These recommendations may also be helpful for the other medications you receive by mail. 

Click here to read IDF’s SCIG Hot Weather Tips. 



Are You Considering Starting a Family?
Join Us for the IDF Young Adult Webinar: Family Planning & PI, Aug. 24, 8 PM ET

Are you entering a new stage in your life and thinking about having a family of your own? Listen to others who have gone through various stages of family planning, and what tips and advice they can give you before the next chapter in your life.

Take part in our upcoming IDF Young Adult Webinar: Family Planning & PI on August 24 at 8 PM ET. This is a free webinar designed just for young adults. 

Click here to learn more. 

This program is supported by a charitable donation from CSL Behring.



New IDF Research Grant Program
First Submission Deadline, July 31

IDF is pleased to announce a new seed grant program to encourage and support Patient Oriented Research on Primary Immunodeficiency Diseases. This initiative will award grants that will support well-defined research projects that have a specified benefit for improving the treatment, health, disease management or diagnosis of persons with PI. Consideration will also be given to studies that contribute to the body of medical knowledge in PI.

The program is open to applicants currently based in the U.S. and will consist of one-year grants. Award values up to $25,000, and a somewhat higher level of support is available for a few exceptional proposals. Grants are considered twice per year. Submission deadlines are July 31, 2016 and January 31, 2017.

Click here for complete details.



Walk Together—Create a Better Future

“Paving the way for generations to come motivates me to walk and raise funds for the fight against PI.” - Sam, Individual with PI

When you put action behind what matters to you, you have the power to change the future. You can help IDF create a better future for those living with PI through IDF Walk for Primary Immunodeficiency 2016. What matters to you? Why do you walk? 

This fall, you can bring your family and friends together in the fight against PI. The reasons to participate are many, the reasons to sit out are few. 

Let’s bring together the entire PI community—every individual, family, and friend! Register now at www.walkforPI.org.

Why do you walk for PI? IDF wants to get to know our participants and learn more about how the walks have made a difference in their lives. To share your story, email walk@primaryimmune.org


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*IDF Zebra Parties
Let’s Get This Party Started!

To officially kick off IDF Walk for Primary Immunodeficiency 2016, we will be hosting IDF Zebra Parties across the country! These fun, festive celebrations are a great opportunity to make friends before the walk and get the conversation going about the best ways to fundraise and recruit team members. 

All registered walkers are encouraged to attend and bring their friends and family who may be interested in learning more about the walks. If you enjoy socializing, playing games, and rocking your zebra stripes, this event is just for you. 

To learn more about you’re the IDF Zebra Party near you, visit your walk's page at www.walkforpi.org

How to RSVP for the Zebra Party Near You
RSVPs are only accepted via email. It’s important to let us know (1) which city you want to attend, (2) your name and (3) how many are attending: walk@primaryimmune.org

Get your favorite zebra attire ready! We hope to see you there!



For Teaching Hospitals: IDF & USIDNET LeBien Visiting Professor Program
Accepting Requests for 2016-2017

IDF invites teaching hospitals to participate in the IDF & USIDNET LeBien Visiting Professor Program—this free educational program for teaching hospitals throughout the U.S. provides a leading clinical immunologist to conduct Grand Rounds and present at educational activities, such as bedside rounds, house staff presentations and medical resident conferences.

Requests for 2016-2017 are now being accepted. Simply write a brief (one page) Letter of Request stating your reason to participate in the program and how your students would benefit. Please include a tentative list of teaching and clinical activities. 

Submit this information to idfvisitingprofessor@primaryimmune.org. Contact IDF should you have any questions: 800-296-4433.

This program is supported by charitable donations from AbbVie, CSL Behring, Grifols, Shire, lgG America | ASD Healthcare | US Bioservices, Octapharma, Sigma-Tau Pharmaceuticals, and the Louis and Virginia Clemente Foundation, Inc. as well as the United States Immunodeficiency Network (USIDNET).



Taking Care of the Next Generation
Ensure IDF Resources for Years to Come

Think back to those first days after your PI diagnosis and what it felt like to have a disease you knew nothing about. Do you recall feeling isolated and scared?

Now, remember the relief you felt when you discovered IDF, an organization with resources you needed and a community that supported you. You finally had answers. You finally found people who understood.

You can make sure the next person diagnosed with a primary immunodeficiency has the resources and the support they need. If you feel IDF has helped you in any way, now is the time to make a gift.

Click here to donate now. Thank you!


IDF ePHR - Traducción De Español Ya Está Disponible
IDF ePHR - Spanish Translation is Now Available

Spanish is spoken as a first language by an estimated 320 to 400 million people worldwide and is the second-most spoken language in the U.S. Since IDF ePHR is such a valuable tool and should be available to as many people as possible, we decided that there was definitely a need for a Spanish version.

IDF now offers a Spanish-translated version of IDF ePHR, so now Spanish-speaking users can store, track and share their health information through IDF ePHR.

To view the IDF ePHR in Spanish, visit www.idfephr.org. Click the dropdown arrow in the top right corner from English to Español-US.

IDF ePHR is exclusively sponsored by CSL Behring. 



Since You Asked
Question & Answer

Q: I had a trip planned to climb Macchu Pichu and cancelled it because I was recently diagnosed with Common Variable Immune Deficiency (CVID) and started on subcutaneous Ig therapy. What is your advice regarding international travel?

Q: How cautious and “germ conscious” do I have to be with my child with primary immunodeficiency? Can we go shopping, to the movies? Should my child go to school?

Click FULL STORY to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols.


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