Primary Immune Tribune
April 2017
IDF 2017 National Conference
Register by May 1 for Early Registration Rate

The countdown has begun to the IDF 2017 National Conference—just 7 weeks away! And we want you to join the IDF community in Anaheim, CA, June 15-17 for the world's largest gathering of people living with primary immunodeficiency diseases (PI).

From physicians to nurses to specialized life management experts, you will learn the latest information and network with those on the cutting edge of research and treatment. There will be something for everyone, and whether you have previously attended or this is your first conference, there will be plenty of sessions for you to enjoy!

Online registration is available at www.idfnationalconference.org/register. Early registration rates are available until Monday, May 1, 2017. Click here to register.

Questions? Contact us at: conference@primaryimmune.org or 414-918-3022. 

IDF 2017 National Conference Sponsors

Legacy Sponsors
CSL Behring
Grifols
Shire

Silver Sponsors
AmerisourceBergen Corporation
Horizon Pharma
Leadiant Bioservices
Octapharma


Have Your Conference Registration Reimbursed!
Become an IDF Order of the Zebra Member

Members of the IDF Order of the Zebra are incredible individuals who raise $1,000 or more for the IDF Walk for Primary Immunodeficiency. If you were a 2016 member of the Order, you automatically qualify for a refund of your conference registration fee. If you would like to become a 2017 member of the Order and earn your conference registration refund, you can:

  1. Go to www.walkforpi.org.
  2. Register for the walk of your choice.
  3. Start fundraising! 
  4. Once $1,000 has been recorded on your personal fundraising page (not your team page), IDF will automatically be notified.

In order to qualify as a 2017 member, $1,000 in donations must be recorded on your page by June 8, 2017. Reimbursements will be processed approximately two weeks after the conference concludes.

For more information, contact us at: walk@primaryimmune.org. Thank you for your support!


Donate to the THINK ZEBRA! Silent Auction
Make Your Creative Donation by June 1

Attendees of the IDF National Conference always enjoy the THINK ZEBRA! Silent Auction, which raises funds to support the mission of IDF. But you don’t have to attend the IDF 2017 National Conference in order to participate! 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. You can be a part of the auction no matter where you are at the conference or around the country.

You can also participate by donating an item. We are looking for 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! 

Please make your donations by June 1, 2017. 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!


Want to Volunteer at the IDF 2017 National Conference?

Are you attending the IDF 2017 National Conference? If yes, then we want you to consider lending a hand while you are there! The conference features three days of learning, discussing and sharing for all ages, and we are seeking volunteers to help us host this amazing event. Volunteers will be assigned to help in a variety of areas, including ushers, hospitality, session monitors, and so much more. We have several volunteer shifts available to meet your needs.

All conference volunteers will receive a free t-shirt and have the opportunity to help make the IDF 2017 National Conference a huge success. You'll have fun while networking and giving back to the PI community. 

To sign-up for your shift, visit the IDF Volunteer Connection Center, and select the date(s) and time(s) that work for you. Questions? Contact us: volunteer@primaryimmune.org

Please remember that sign-ups are voluntary—no discounts or special pricing will be applied for volunteering. Thank you!


Do You Use Facebook Regularly? Want to Help Others Living with PI?
Contact IDF to Learn How You Can Help

Facebook has more than 1.8 billion users worldwide, and if you are one of them and consider yourself well versed in the features of the popular platform, we want to hear from you! IDF is looking for individuals and family members living with PI who are interested in volunteering their time to help engage and connect others on Facebook, specifically in diagnosis specific IDF Facebook groups. If you feel you are a savvy Facebook user and want to become more involved, contact IDF: volunteer@primaryimmune.org.


National Primary Immunodeficiency Awareness Month & World PI Week
Tell Us How You Promoted Awareness!

National Primary Immunodeficiency Awareness Month & World PI Week (April 22-29) are coming to a close, and the IDF community promoted awareness and were THINKing ZEBRA! throughout the month. 


IDF staff members celebrate Awareness Month and World PI Week

There are approximately 250,000 people who are diagnosed with a primary immunodeficiency disease (PI) in the U.S., and thousands more go undetected. Today, many people diagnosed with a PI can live healthy, productive lives with early diagnosis and appropriate therapies, so increased awareness of PI is critical.

We want to hear how you created awareness in your community. Contact us with your stories of Awareness Month and World PI Week: info@primaryimmune.org.


Have You Seen This IDF Poster in Your Doctor’s Office?
No? Then Sign Up & Serve as an IDF Liaison

You can help get IDF resources into the hands of those who need them by becoming an IDF Liaison! IDF Liaisons are volunteers who visit local healthcare professionals who care for individuals diagnosed with PI. By building relationships with clinicians, you encourage them to discuss the IDF resources with their patients and distribute helpful IDF materials.

Visit the IDF Volunteer Connection Center to sign-up to become an IDF Liaison: www.primaryimmune.org/volunteer

Questions? Contact the IDF Volunteer Development Manager: 800-296-4433 or volunteer@primaryimmune.org.

IDF Liaisons are a part of the IDF Outreach Initiative, which is supported by Lead Sponsor Shire. 


Invitations for the 2017 Flu, Chickenpox, and Shingles Survey Will be Sent in May!
Results Will Help Create Guidelines and Best Practices for These Vaccines

An email invitation for the 2017 Flu, Chickenpox, and Shingles Survey is coming your way in May! IDF has received a research grant to study the use of Shingles, 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.
 
Once you receive your invitation, please click the link provided at the end of the email to participate. 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.
 
Please contact IDF if you have any questions: 800-296-4433 or idfresearch@primaryimmune.org. Thank you in advance for participating!


IDF Advocates against Discriminatory Health Plans in Nevada

This spring, IDF’s public policy state efforts have focused on supporting legislation to address discriminatory health plan designs in Nevada, specifically to address the challenges that people with chronic diseases face in being able to access and afford necessary specialty medication, such as immunoglobulin (Ig) replacement therapy, even when they are covered by health insurance. 

IDF began working on this Nevada effort in 2016 by forming Affordable Co-pays and Treatments for Nevada (ACT for Nevada), a coalition of patient organizations committed to ensuring more equitable, affordable and accessible health insurance coverage for those living with chronic illnesses. In addition to IDF, members include the American Cancer Society Cancer Action Network, Arthritis Foundation, Colors of Lupus – Nevada, National Eczema Association, National Multiple Sclerosis Society, National Psoriasis Foundation, Nevada Diabetes Association and Nevada Heart Association. ACT for Nevada conducted a comprehensive digital campaign that recruited and mobilized 5,000 Nevadans to support the coalition’s mission to address high out-of-pocket costs and discriminatory health insurance practices that economically endanger patients across the state. 

Click FULL STORY to learn about ACT for Nevada. 

Want to get involved in IDF advocacy efforts? Sign up for IDF Action Alerts, and be notified when you need to contact your legislators: www.primaryimmune.org/action-alerts.  


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IDF Nutrition and Immunity Webinar Recording Now Available

The recording of the April 2017 IDF PI CONNECT webinar on Nutrition and Immunity is now available. To view the recording, go to www.primaryimmune.org/webinars, and click the first video listed titled “Nutrition and Immunity.” 

The presenter was Victoria Dimitriades, MD, 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.

The webinar reviews the nutritional building blocks of the immune system and discusses ways you can optimize your health by giving your body the essential fuel it needs to perform. There was an excellent Question and Answer session at the end.

Be sure to check out the other recordings on the webinar page, as IDF covers a variety of information that relates to different interests and life experiences with primary immunodeficiency diseases.

Learn more about IDF PI CONNECT, the IDF Patient-Powered Research Network: www.idfpiconnect.org
 


Chair of IDF Board of Trustees Receives Honor
John W. Seymour, PhD, LMFT Is Distinguished Faculty Scholar

John W. Seymour, PhD, LMFT, Chair of the IDF Board of Trustees and Professor of Counseling and Student Personnel at the Minnesota State University, Mankato, received the honor of 2017 Distinguished Faculty Scholar, awarded to tenured professors whose body of scholarship and current level of scholarly activity warrant distinction within the university community. 

Click FULL STORY to learn about Dr. Seymour’s honor. 


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Avoid Phishing Scams for People with PI
Remember Best Practices

Phishing is the fraudulent practice of sending emails claiming to be from a reputable company in order to get individuals to reveal personal information. Recently members of the community have alerted IDF that they have received e-mails that appear to be phishing scams targeting people with PI, asking them to complete a survey and then asking them for personal details, such as your social security number, credit card information or banking passwords. IDF surveys will never ask for this information. 

Please remember to be cautious. Don’t click on links from senders you don’t know, and don’t enter your personal information unless it’s a trusted site. If you have the slightest doubt, don’t risk it. The best way to prevent phishing is to consistently reject any email that asks you to provide confidential data. Delete these emails and call the company in question if needed.


Since You Asked
Question & Answer

Question: I was just diagnosed with Specific Antibody Deficiency and am currently awaiting insurance approval for intravenous immunoglobulin (IVIG). How cautious do I need to be in avoiding infections? Should I isolate myself until treatment starts? I don't want to be paranoid; however, I do not want to be foolish.

Question: My 7-year-old son was just diagnosed with Common Variable Immune Deficiency (CVID). He does not really understand what this means for him. He just feels alone. How can I help him to understand his illness and not feel so alone?

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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