Primary Immune Tribune
August 2016


Let’s Bring Everyone Together to Create a Better Future for the PI Community
Join IDF Walk for Primary Immunodeficiency 2016

Help bring together the entire PI community—every individual, family, friend touched by primary immunodeficiency diseases—for IDF Walk for Primary Immunodeficiency 2016. People with PI face an increased vulnerability to infections, endure recurrent health problems and often develop serious illnesses throughout their entire lives. They deserve better!

So create a team for IDF Walk for PI, and join us in the fight against these rare, chronic diseases. Help create a better future for thousands of individuals and families! Check out this fun video to get a sneak peek into our walk experience!

 

Together we are #zebrastrong! 
Register today!
www.walkforPI.org

Click FULL STORY to see where IDF Walk for PI will be held this year!


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Make It a Great School Year for You and Your Child
Order Copies of the IDF School Guide

Students across the country are heading back to the classroom and starting the school year. Do you need help communicating with your child’s school?

At no cost to you, download or order the Immune Deficiency Foundation School Guide for Students with Primary Immunodeficiency Diseases. The guide is full of advice and resources to help you ensure a great school year for your child.

Click here to order or download the IDF School Guide.

This publication was made possible through a generous grant from Shire.



Give Your Time to an IDF Walk for PI Near You
One Day Volunteer Opportunity

IDF Walk for PI season is here, and we need your help. If you live in or near a walk this season (click here to view all locations), we are seeking amazing volunteers to lend a helping hand!

Volunteers are needed for a variety of roles, including registration, route support, set-up/clean-up, and so much more! Several volunteer shifts are available, but help is especially needed for the first and last shifts of the day.

All walk volunteers receive a free walk t-shirt and have the opportunity to help make IDF Walk for PI a huge success.

Please sign up today to volunteer. It takes 3 easy steps

  1. Click here to access our online sign-up sheets.
  2. Choose the DATE and CITY of the walk; then select the SHIFT that you want to volunteer for.
  3. Sign up! It's easy—you will complete the volunteer registration form and review the volunteer waiver.

If you wish to sign up more than one person, please note that anyone 18 or older should complete their own separate volunteer sign-up registration. Volunteers must be at least 10 years old and any volunteer under the age of 15 must be accompanied by an adult.

If you are a group leader with five (5) or more volunteers, to make sure that we can accommodate your group, please contact Evette Watson at ewatson@primaryimmune.org.

Thank you for your support of IDF!



Is Back-to-School Shopping on Your To-Do List?
Shop AmazonSmile and Support IDF

School is back in session, and we know you still have shopping to do!

You can shop through AmazonSmile and support IDF. Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to IDF. Go to: http://smile.amazon.com/ch/52-1214782.

Cross those items off your to-do list, and help make a difference!



How Do You Balance Your Health and Social Life?
Find Ideas at Upcoming IDF Young Adult Webinar: Sept. 21

The teenage years are over, and you are now an adult. You make decisions, and—for the most part—you make the rules. Your choices may be influenced by the fact that you have a PI, but you can make decisions that will help you live a fun, healthy life. Listen to our panelists discuss their experiences and answer your questions about health and social life.

IDF Young Adult Webinar
Balancing Your Health and Your Social Life
September 21, 2016 | 8 PM ET

Click here to learn more and to register.

Questions? Contact IDF: idfyoungadult@primaryimmune.org or 800-296-4433.

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



Become an IDF Walk for PI Medical Center Partner
Show Your Commitment to the PI Community

Medical centers across the country have the power to help improve the lives of people with PI by partnering with IDF as an IDF Walk for PI Medical Center Partner. It’s as simple as creating a team, inviting individuals connected to PI to your team, and raising funds that will ensure IDF can continue to provide the community with vital resources and programs. Not only will you raise your institution’s visibility within the PI community, but your patients will join a strong community coming together to make a difference.

Join our IDF Walk for PI Medical Center Partners in 2016, including AbsoluteCARE, Children’s Hospital of Philadelphia, Massachusetts General, University Hospitals, and others in creating better lives for patients and reminding them that they are not alone.
 
If you’re a medical professional who is interested in learning more or if you’re a patient or parent who thinks that your care team might want to get involved, please e-mail walk@primaryimmune.org.



Since You Asked
Question & Answer

Q: Help! My son is starting kindergarten this year, and I am worried that the school will not understand his primary immunodeficiency. I want to help my child have a happy and healthy school year. What should I do?

Q: I have CVID and receive IVIG every three weeks. I have struggled for the past few years with severe joint pain, but my lab work always comes back normal. Is there a statement or notes supporting inaccurate lab values due to IVIG antibodies? I’m just doing my own research to see if that is throwing off my labs for Rheumatoid Arthritis, Lupus, Sjogrens, or anything else that could cause this pain.

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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