Primary Immune Tribune
September 2015
Now Available
IDF 2015 National Conference Presentations

The Immune Deficiency Foundation (IDF) is pleased to provide presentations from the IDF 2015 National Conference online. Available sessions are listed on our National Conference Presentations page, featured in the IDF Videos hub at www.primaryimmune.org/idf-videos. We appreciate the work of ourIDF National Conference presenters, and we hope the primary immunodeficiency community can learn from the valuable content shared.



Touching Stories and Inspiring Messages
Watch New Videos from the National Conference

IDF Reel Stories is a video community designed to encourage and empower individuals living with primary immunodeficiency and their loved ones. The videos captured at the IDF 2015 National Conference are now posted on our IDF Reel Stories YouTube channel, including touching stories and inspiring messages from teens, adults, parents and families. Go to: www.youtube.com/user/idfreelstories



Save the Dates for 2016 IDF Retreats
Boston & Salt Lake City

IDF Retreats are weekend gatherings designed with everyone in the primary immunodeficiency community in mind—including you! The dates and locations for the 2016 IDF Retreats have been set:

Boston, MA

June 17-19, 2016

Boston Marriott Newton

Salt Lake City, UT

August 19-21, 2016

Sheraton Salt Lake City Hotel

Patients, parents, siblings, children and partners are encouraged to attend and learn how to develop better approaches to living with primary immunodeficiency. Plus, you can connect with others going through similar experiences and have some fun.

Registration will begin in February 2016. Stay tuned for more details!



Research Fund Created because of Success of IDF Walk for PI

We are only days away from kicking off our 2015 IDF Walk for Primary Immunodeficiency season in Cleveland and Boston, Sunday, October 4!

As the excitement builds, IDF has promising news to share. Recently, the IDF Board of Trustees voted to establish a research fund that will soon be able to fund clinical, translational research projects aimed at directly impacting people with PI. The $250,000 allocated to this fund was made possible directly as a result of the funds raised through our 2015 Walk for PI.

Because of what our past supporters have done, IDF will be able to fund research in ways that it never has before. To ensure that these efforts continue, we hope you will create a team and commit to joining us: www.walkforPI.org.

Please visit www.walkforPI.org today so we can continue to serve the growing needs of the PI community through the research fund and the other resources that IDF provides.



Upcoming PI CONNECT Research Webinar
Body Temperature and Fever Response

The next PI CONNECT Research Webinar, featuring Body Temperature and Fever Response, will be held on Thursday, October 29, 8 PM ET. This topic is particularly important as many patients have expressed concerns about starting with a lower body temperature than normal (98.6 degrees). Often, a slight fever could be overlooked by a medical provider, even when there is an infection present. Others have no temperature increase, or fever, even when they have an infection. This research webinar will explain these occurrences and provide attendees with valuable knowledge they can use to improve their visits with medical providers.

This webinar is exclusively available to PI CONNECT Research Forum users, so be sure to sign up. Registration details will be available soon on the PI CONNECT Research Forum. As always, if you have any questions, please contact us at info@idfephr.org or 800-296-4433.

How was this topic chosen? Patient Power!

At the PI CONNECT Live! session at the IDF 2015 National Conference, the top four discussions in the PI CONNECT Research Forum were taken offline and discussed real-time between patients and researchers. Participants of the live forum nominated their favorite discussions to be the next research webinar topic, and the top two nominations were put out to the entire IDF community for a vote. That is how Body Temperature and Fever Response was chosen.



Advocates Rally During Newborn Screening Awareness Month

Thank you for helping IDF raise awareness about the importance of newborn screening throughout September, National Newborn Screening Awareness Month. Your social media posts, photos, and community awareness events played a critical part in ensuring all newborns have a chance for a healthy life. Keep up the great work!

Currently, 34 states screening for Severe Combined Immune Deficiency (SCID) which is characterized by an inability to resist infections and is a life-threatening syndrome. Without definitive treatment, SCID is usually fatal by two years of age. Additionally, newborns in most states, the District of Columbia and Puerto Rico are screened for at least 29 conditions within the first few days after birth. Using a few drops of blood, newborn screening detects a treatable condition in about 1 in 300 babies born each year.


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IDF Get Connected Groups

Around the country, wonderful things are happening at IDF Get Connected Groups! Individuals with primary immunodeficiency and their family members are connecting in their local communities, creating life-changing experiences for those who attend.

On September 12, a new IDF Get Connected Group met for the first time in Amarillo, TX.  All of the attendees expressed how amazing it was to connect with others who understood their struggles and shared their experiences. This group, led by IDF Volunteer Amy Gilbert, spent part of their time together exploring the many resources available through the IDF website. New friendships were made, and they already set the date for their next Get Connected Group for November 7! 

If you are interested in starting an IDF Get Connected Group in your area, contact IDF at volunteer@primaryimmune.org or 800-296-4433.



Be a Superhero & Volunteer for IDF!
Advocate – Support – Educate

IDF is looking SUPER volunteers who are ready to make a difference in the primary immunodeficiency community! Whether you have few hours or can volunteer weekly, you can make a difference in the lives of others. 

Get started today! Visit www.primaryimmune.org/volunteer and complete the Volunteer Application.

For more information on how you can join IDF’s SUPER Volunteer Network, call 800-296-4433 or e-mail volunteer@primaryimmune.org.


Plasma Donations Matter: International Plasma Awareness Week, October 11-17

Did you know that it takes 130 plasma donation to treat one patient with primary immunodeficiency disease? To raise global awareness about plasma donation, the Plasma Protein Therapeutics Association (PPTA) and its member companies are sponsoring the third annual International Plasma Awareness Week, October 11-17. They created a series of infographics and other materials to promote International Plasma Awareness Week (IPAW), which also recognizes the contributions of plasma donors in saving and improving lives, and helps increase understanding about lifesaving plasma protein therapies and rare diseases

Many patients with primary immunodeficiency diseases rely on plasma protein therapies, such as immunoglobulin therapy. PPTA member companies have planned a variety of activities at plasma collection facilities in the U.S. and Europe.

IDF encourages the primary immunodeficiency community to promote awareness of the importance of plasma donation during this week. Visit www.donatingplasma.org for more info and use #IPAW_2015 on social media.



Since You Asked
IDF Question and Answer

Q: I will be turning 65 at the end of the year, and I am trying to understand Medicare coverage. I have CVID and do subcutaneous Ig therapy. Will this be covered and what is my best option?

Q: My girlfriend has received IVIG treatment for years. She recently had blood work done that showed herpes 2 antibodies. She has never had a breakout nor needed to suspect that she contracted this disease. Do you have any information on this?

Click FULL STORY to see the answer to these questions.


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