Primary Immune Tribune
June 2016
Mark Your Calendar

Upcoming Events

IDF Retreat - Salt Lake City
August 19-21
Sheraton Salt Lake City Hotel

Featuring Outstanding Educational Presentations, Valuable Life Management Sessions and Special Interest Sessions, as well as:

• Special CGD Program
• New IDF SCID Program for Young Adults &
Older Teens

Click here to register.

 

 

 

 

IDF Events in July

IDF Education Meetings
Northbrook, IL - July 16
St. Louis, MO - July 23
Charlotte, NC - July 30

IDF Teen Escape Weekends
Chicago, IL (Northbrook) - July 16-17
Charlotte, NC - July 30-31

IDF Get Connected Groups
San Francisco, CA - July 9
Charlotte, NC - July 9
Kansas City, MO - July 16
Fairfax, VA - July 26
 



Save the Date

IDF Walk for Primary Immunodeficiency
Create Your Team Now!
First National Walk, September 25

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



Do You See This Poster in Your Doctor’s Office?
If Not, IDF Needs Your Help!

You are needed to serve as an IDF Liaison in your area! IDF Liaisons are volunteers who visit local healthcare professionals who care for individuals diagnosed with PI. You encourage them to discuss IDF with their patients and distribute IDF materials.

Get started today generating awareness and building relationships with healthcare professionals.

Visit the IDF Volunteer Connection Center and 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 Baxalta, now part of Shire.



Have You Had an Antibiotic Resistant Infection?
Share Your Story to Help Raise Awareness

If you or a loved one has experienced an antibiotic resistant infection, share your story with IDF. We are working with the U.S. Stakeholder Forum on Antimicrobial Resistance (S-FAR) as it develops a Faces of Antibiotic Resistance report to be publicly released in mid-November. The goal of the project is to help federal policymakers, media and the public understand the real life impact of antimicrobial resistance through a collection of stories from patients and family members directly impacted by a resistant infection.

According to the Centers for Disease Control and Prevention (CDC), antibiotic resistant bacteria are responsible for at least 23,000 deaths and at least 2 million infections each year, and cost the healthcare system approximately $20 billion. Those with PI depend on antibiotics to treat infections, and resistance threatens the availability of antibiotics that work.

IDF is seeking patient stories that may be considered for the Faces of Antibiotic Resistance report. The deadline for submitting interested patient names is August 1, 2016. IDF can assist you in writing your story, and you will have final approval rights on your story before publication. If you are interested, please e-mail idfadvocacy@primaryimmune.org.



Man Competes in Ironman in Honor of Girlfriend with Primary Immunodeficiency
Raises Funds for IDF and the PI Community

Can you imagine swimming a mile, biking 56 more and then running a half marathon all in one afternoon?

In August, Kyle Considine will do just that, competing in the Ironman 70.3 Timberman in honor of his girlfriend, Claudia Pomponi, who was diagnosed with PI almost three years ago. Kyle explains, “My girlfriend is one of the strongest people I know, and I am competing in the Ironman 70.3 Timberman to show her that she is not alone in this journey.”

Kyle is grateful that Claudia receives proper medical treatment and wanted to find a way to give back to members of the PI community who may not be as fortunate. As he trains, he is raising money for IDF and has raised $2,000 so far.

IDF sends Kyle our heartfelt appreciation and wishes him the best of luck at Ironman this August.

Are you participating in a 5K, a Color Run, a Tough Mudder, or another event where you could raise money for IDF? Tell us and we'll let you know what resources we have that could help you: development@primaryimmune.org.



Ensuring All Babies in U.S. Are Screened for SCID
39 States Screening, More Work Ahead

Georgia has become the 39th state to begin screening for Severe Combined Immune Deficiency (SCID), also known as the bubble boy disease, as of June 1, 2016. Adding Georgia covers 87% of all births in the U.S., but there are still states that have yet to begin screening for SCID. Each state varies in regards to how their newborn screening is implemented.

For the details of the current status of implementation, click here.



Accepting Requests for 2016-2017
IDF & USIDNET LeBien Visiting Professor Program

IDF invites teaching hospitals in the U.S. 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, Baxalta, now part of Shire, CSL Behring, Grifols, lgG America | ASD Healthcare | US Bioservices, Octapharma, and the Louis and Virginia Clemente Foundation, Inc. as well as the United States Immunodeficiency Network (USIDNET).



Get Rewarded for Supporting IDF Walk for PI
Check Out the 2016 Incentive Prizes

After registering for IDF Walk for PI, you are eligible to earn one of IDF’s one-of-a-kind prizes. The more you raise, the bigger the prize! Set a goal for individual fundraising* and spread awareness of PI in style.

  • Raise $250 & receive a Walk Baseball Cap
  • Raise $500 & receive a Walk Fleece Blanket
  • Raise $1,000 & receive a Walk Hoodie
  • Raise $2,500 & receive a Walk Duffel
  • Raise $5,000 & receive a Walk Fitness Bundle

What will you earn in 2016? For some helpful tips on how to raise the bar this year, visit the “Get Started” tab at www.walkforPI.org.

IDF Walk for Primary Immunodeficiency is made possible by National Presenting Walk Sponsor Baxalta, now part of Shire, and National Walk Sponsors Coram CVS | Specialty Infusion Services, CSL Behring, Grifols, Horizon Pharma, IgG America | ASD Healthcare | US Bioservices, Kedrion Biopharma, Octapharma, and Option Care.

*Donations are based on individual fundraising, not team donations.



Since You Asked
Question & Answer

Question: Am I eligible to use Family & Medical Leave Act (FMLA) for my child’s illnesses and treatment?

Question: Are there different treatment options for non-bacterial infections for someone with an IgA Deficiency?

Click FULL STORY to see the answer to these questions.


[FULL STORY]


Click here to subscribe to the IDF eNewsletter


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


Powered by IMN