Primary Immune Tribune
March 2017
Top 9 Reasons to Attend the IDF 2017 National Conference

Why should you be a part of the IDF 2017 National Conference? There are so many reasons to take part in the world’s largest gathering of people with primary immunodeficiency diseases (PI), but because it’s our 9th conference, we have 9 reasons for you to make sure you don’t miss this life changing event!

 

9. Memorable Special Events Night at Disneyland!
8. Interactive IDF Exhibit Hall
7. Fantastic THINK ZEBRA! Silent Auction Items
6. For Clinicians: Professional Medical Education Program
5. IDF Youth Program: Education & Fun for All Ages!
4. Nearly 40 Presentations about Healthcare & Life Management
3. New Sessions & Special Symposia
2. Learn about Your PI
1. Be a Part of Our Community!


Click FULL STORY for complete details.


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April Is for Primary Immunodeficiency Awareness!
4 Ways You Can Help Spread the Word

National Primary Immunodeficiency Awareness Month begins April 1, and World PI Week is April 22-29. These are perfect opportunities for those within the IDF community to increase their efforts to promote awareness of primary immunodeficiency diseases (PI), whether it be locally, nationally or internationally.

IDF has many resources to help you succeed in raising awareness for PI, during Awareness Month and year round. Here are 4 easy ways you can create awareness.

1. Share This for PI Awareness
   (Spread the Word on Social Media!)

2. Share IDF Resources – Like the IDF “Learn More” Poster

3. Join the Global Effort – World PI Week, April 22-29

4. THINK ZEBRA! Wear Zebra!

Click FULL STORY for more information.


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Walking Together for Better Lives and Cures
IDF Walk for Primary Immunodeficiency 2017

Are you ready to take strides to help the primary immunodeficiency (PI) community live better lives? Do you want to help find cures for these rare, chronic disorders? Then sign up and join the herd for IDF Walk for Primary Immunodeficiency 2017!

You can make a difference in the lives of people with PI. IDF Walk for PI has raised over $3 million since 2013, funding vital IDF programs and initiatives that are helping people lead better lives and changing the future for the PI community. 

Did you know that IDF is now awarding research grants because of the dollars raised by our walk teams and their supporters? Your participation in 2017 will ensure that efforts like these continue. Will you walk with us? Will you fight for cures for all disorders and help create better lives for those with PI? We can't do it without you! Register now at www.walkforPI.org

Sign Up & Join the Herd!

IDF Walk for Primary Immunodeficiency 2017

National Walks
Atlanta: 10/28
Boston: 10/1
Chicago: 10/22
Cleveland: 9/24
Dallas: 11/11
Fort Lauderdale: 11/19
Kansas City: 10/8
Los Angeles: 11/5
New York City: 10/22
Philadelphia: 10/15
St. Louis: 10/15
Tampa, FL: 11/18

Community Walks
Organize Your Own

Nationwide Virtual Walk
Walk from Anywhere

Want to have your IDF 2017 National Conference registration reimbursed? Become an IDF Order of the Zebra Member!

Click FULL STORY for more information.


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Since You Asked
Question & Answer

Q: My workplace requires that I have an annual TB test. I started IVIG 4 months ago. I am curious if the TB test is accurate (since I am getting infused with new antibodies every month) and if it is safe for me to get. My specialist said it would be ok since my T cells are good. I do not understand as I thought that the TB test was injecting the TB antigen and then watching for a response. Can you explain this please?

Q: How can I find out more about any open clinical trials for CGD?

Click FULL STORY to see the answer to these questions.


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Nutrition & Immunity Webinar
Thursday, April 13 at 7 PM ET

Register now for the next IDF PI CONNECT Research Webinar, covering Nutrition and Immunity on Thursday, April 13, at 7 PM ET. The webinar will review the nutritional building blocks of the immune system and discuss ways to optimize your health by giving the body the essential fuel it needs to perform. There will be a Q&A session at the end of the presentation. 

Presenting on the topic will be Victoria Dimitriades, MD. Dr. Dimitriades is an Associate Clinical Professor of Pediatrics in the Division of Infectious Diseases, Immunology & Allergy at the University of California Davis Health System in Sacramento, CA.

This webinar is exclusively available to IDF PI CONNECT Research Forum users, so be sure to login to the forum and register for the webinar.

How to Register

  1. Go to www.idfpiconnect.org, and click the "Login" link or "Get Started" to create an account.
  2. Once you are signed into the research forum, click on the webinar picture at the top of the page, or on the registration link on the right hand side of the page.
  3. Fill out and submit the form, and you will receive a registration confirmation e-mail.

If you have questions, please contact us at info@idfephr.org.



On Medicare and Using SCIG?

Some Medicare beneficiaries receiving subcutaneous immunoglobulin therapy (SCIG) have been notified by their specialty pharmacies that they will need to switch SCIG products, switch to IVIG, or other changes. This is a result of the recently passed 21st Century Cures Act which affects some aspects of Medicare reimbursement for the administration of SCIG. 

Please note that there has been no change in the availability of the various subcutaneous products and that the products continue to be covered and reimbursed by Medicare. 

This change in Medicare reimbursement, however, has led some specialty pharmacies to make business decisions about how they serve those on Medicare receiving SCIG.

If you have received a notification of this type, IDF strongly recommends you contact both your provider and the manufacturer of your Ig product. The manufacturers can assist you in finding a specialty pharmacy that will continue to service you with the product that your provider has specifically chosen for you. 

Click here to see a recent IDF blog post for more information.



Wanted: Great THINK ZEBRA! Silent Auction Items
Get Creative and Contribute!

The IDF 2017 National Conference will once again feature the ever-popular THINK ZEBRA! Silent Auction to raise funds to support the mission of IDF. We will use mobile bidding instead of the traditional pen-and-paper bidding, so you’ll be able to bid from your phone or mobile device. No matter where you are at the conference or around the country, you can participate!

To make the auction a success, we need your help in securing items that:

  • People will want to bid on. Examples include anything zebra striped, themed baskets, jewelry and electronics. 
  • You can easily ship to IDF or bring with you to the national conference. 
  • Can be registered online at www.biddingforgood.com/THINKZEBRA, so we know we can count on them! 

If you have any questions or need item ideas, please e-mail development@primaryimmune.org. 

Items must have a value of at least $25, and IDF reserves the right to withhold duplicate items or items deemed inappropriate for the auction. Thank you!



Seeking People with WHIM Syndrome

WHIM Syndrome is a rare type of primary immunodeficiency disease (PI). WHIM is an acronym for some of the characteristic symptoms of the disorder: Warts, Hypogammaglobulinemia, Infections, Myelokathexis. This disorder is an autosomal recessive disorder with severe warts, recurrent bacterial and viral infections, low but not absent immunoglobulins and neutropenia (low granulocytes). The neutropenia is due to failure of the bone marrow to release granulocytes into the blood stream. It is caused by a defective gene for CXCR4, a chemokine receptor protein that regulates leukocyte movement. In addition to Ig replacement, treatment includes granulocyte growth factor (G-CSF).

IDF is currently looking to connect with individuals or families who have been diagnosed with WHIM Syndrome to help us develop programs and resources for this disorder. If you or someone you know has this diagnosis, please contact us at info@primaryimmune.org.


Coming Soon: Survey of Zoster, Varicella and Influenza
Results Will Help Create Guidelines and Best Practices for These Vaccines

IDF has received a research grant to study the use of zoster (Shingles), varicella (Chickenpox) and influenza (Seasonal Flu) vaccines in people with PI. A survey like this has not been done before, and the data collected will help immunologists create guidelines and best practices for these vaccines.

Your participation is vital to our community and will provide information we currently do not have about Shingles, Chickenpox and Seasonal Flu in the PI community.

Invitations to participate in the survey will be sent via email in early May 2017. We thank you in advance for your help with this very important survey.

If you have any questions, please contact us at idfresearch@primaryimmune.org.



IDF Calendar of Events

Upcoming IDF Education Meetings
Atlanta, GA: April 1
Omaha, NE: April 29
Portland, OR: April 29
Birmingham, AL: May 6
St. Louis, MO: May 13
Houston, TX: May 20
West Harrison, NY: July 29

April IDF Get Connected Groups
Murray, UT: April 1
Bonita Springs, FL: April 4
San Francisco: April 8
Burke, VA: April 25

IDF 2017 National Conference
Anaheim, CA: June 15-17

IDF Teen Escapes 2017
Dallas, TX: July 15-16
West Harrison, New York: July 29-30

 

For a complete list of IDF events, go to: www.primaryimmune.org/events-calendar.
Our calendar is updated regularly as events are confirmed.



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

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