Primary Immune Tribune
April 2016
Mark Your Calendar

IDF Events in May

Advocates Enhancing Access - Training
Indianapolis, IN - Saturday, May 7

PI CONNECT Research Webinar
Women's Health Issues
Thursday, May 12, 8 PM ET

IDF Young Adult Webinar
Health Insurance – Get the Facts
Wednesday, May 18, 8 PM ET

IDF Get Connected Groups
St. Charles, MO - Thursday, May 12
Kansas City, MO - Saturday, May 21
Madison, AL - Saturday, May 21

IDF Family Conference Days
Los Angeles, CA - Saturday, May 14
Cleveland, OH - Saturday, May 21

 

Upcoming Events

IDF Retreats
Boston, MA - June 17-19
Salt Lake City - August 19-21

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

IDF Walk for Primary Immunodeficiency
Registration Now Open!
First National Walk, September 25

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



Exciting New Research on CVID in The New England Journal of Medicine
“Loss of B Cells in Patients with Heterozygous Mutations in IKAROS”

A recent article in The New England Journal of Medicine, “Loss of B Cells in Patients with Heterozygous Mutations in IKAROS,” details exciting new research about Common Variable Immune Deficiency (CVID). Click here to read the article.

Francis Collins, MD, PhD, the Director of the National Institutes of Health (NIH), recently discussed the study on his blog: http://directorsblog.nih.gov/2016/03/29/molecular-answers-found-for-a-mysterious-rare-immune-disorder/.

Congratulations to all involved in the study, including members of the IDF Medical Advisory Committee: Sergio D. Rosenzweig, MD, PhD, National Institutes of Health; Mary Ellen Conley, MD; Charlotte Cunningham-Rundles, MD, PhD, Mt. Sinai Medical Center; Thomas Fleisher, MD, National Institutes of Health; Erwin Gelfand, MD, National Jewish Medical and Research Center; and Jordan Orange, MD, PhD, Texas Children’s Hospital.



IDF Retreats 2016: Join Us for a Wonderful Weekend!
Boston, June 17-19 & Salt Lake City, August 19-21

You’ll want to be a part of IDF Retreats 2016. These weekend gatherings are designed with everyone in the primary immunodeficiency community in mind—including you!

Boston
Boston Marriott Newton
June 17-19, 2016
Click here to register for Boston.

Salt Lake City
Sheraton Salt Lake City Hotel
August 19-21, 2016
Click here to register for Salt Lake City.

Individuals, 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! 


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Webinar on Women’s Health Issues – May 12, 8 PM
IDF PI CONNECT Research Forum Webinar

The next PI CONNECT Research Webinar, covering Women's Health Issues, will be held on Thursday, May 12, 8 PM ET. Information presented will include results from the IDF Women’s Reproductive Health Survey, current research in the field, as well as female issues such as puberty, menarche, menopause and pregnancy in PI. There will also be a Q&A at the end of the presentation.

Presenting on the topic will be Patricia Lugar, MD, MS, an Assistant Professor at Duke University School of Medicine, who specializes in Allergy and Immunology, Internal Medicine, Pulmonary Disease, and Critical Care Medicine in Raleigh, North Carolina.

This webinar is exclusively available to PI CONNECT Research Forum users, so be sure to sign up at www.idfpiconnect.org.

Click here for registration details. As always, if you have any questions, please contact us at info@idfephr.org or 800-296-4433.



Walk Together – Create a Better Future
IDF Walk for Primary Immunodeficiency 2016

You have the power to make a difference in the primary immunodeficiency community through IDF Walk for Primary Immunodeficiency, uniting individuals, families, friends and organizations across the country to help create better lives for individuals who face a constant battle because of primary immunodeficiency diseases (PI). For some, the walk is the first time that they will meet another person with PI. For others, it is a pleasant reminder that they are not alone. Will you join us?

By creating a team, you will join IDF in funding vital programs & resources for those affected by PI, and powering critical research that will lead to a better understanding of these rare, chronic diseases. Join us in walking towards earlier diagnosis and access to treatment for generations to come. Together, we are zebra strong!

Create a Team— Change a Life!


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SCID Screening Begins in Maryland
37th State to Protect Babies from Deadly Disease

Beginning April 1, 2016, Maryland became the 37th state to begin screening for Severe Combined Immune Deficiency (SCID). IDF applauds the State of Maryland for recognizing the importance of this initiative and including a dedicated line item in this year’s budget to start screening for SCID. In addition to being home to IDF, Maryland also offers a wealth of resources in terms of hospitals and medical experts that specialize in the treatment of SCID, including the Johns Hopkins Children’s Center in Baltimore and the Children’s National Medical Center in Washington, DC. 

Our advocacy and education efforts focus on ensuring that newborn screening for this terrible disease is established in all 50 states so that all babies—no matter where they are born—have the chance at a normal, healthy life.  

For more information about the IDF SCID Newborn Screening Campaign, go to: www.idfscidnewbornscreening.org



Indiana: Learn How to Make Your Voice Heard
New Training Teaches Volunteers to Advocate

This year, IDF launched a state-based advocacy initiative, Advocates Enhancing Access—a training focused on educating and cultivating advocates so they can learn and know what to do when legislative issues arise that impact their health. Join us for our next-half day program:

Advocates Enhancing Access Training
Indianapolis, IN
Saturday, May 7
9:00 am - 1:00 pm

Since Indiana is a state not currently screening for Severe Combined Immune Deficiency (SCID), our legislative focus will be what the IDF community can do to rally together and pass legislation that enacts newborn screening for SCID in Indiana. Click here to register.

The Advocates Enhancing Access Training is sponsored by CSL Behring.



Putting the F-U-N in Fundraising
Ways Our Community Recently Raised Funds for IDF

Members of the IDF community have recently exhibited their creativity as they put the F-U-N in fundraising, including: 

  • Competing in Iron Man
  • Hosting Pie for PI at school
  • Running a shoe shining business
  • Planning a PI(e) fight
  • Selling a crop of grain
  • Donating a car
  • Leading a yoga class
  • Organizing a classic car meet up
  • Dedicating a birthday to IDF

Inspired? Throw your own fundraiser for IDF and tell us about it.

For questions and more information, contact development@primaryimmune.org. Special thanks to all our creative, dedicated fundraisers.

Pictured: In honor of Pi Day (March 14), Riley Herbeck’s (second from left) math class at Plainfield High School Central Campus celebrated Pie for PI by raising $2,500 for IDF. Click here to read more about the event on our blog.



Register for IDF Teen Escapes 2016
Life-changing Weekends for Teens and Parents


IDF Teen Escape is a weekend getaway exclusively for teens, ages 12-18, who have been diagnosed with primary immunodeficiency diseases (PI). We will hold two this summer:

Chicago, IL (Northbrook)
July 16-17, 2016
Renaissance Chicago North Shore Hotel

Charlotte, NC
July 30-31, 2016
Sheraton Charlotte Airport Hotel


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IDF Young Adult Webinar: Wednesday, May 18
Health Insurance – Get the Facts

Understanding the maze of issues involved with health insurance can be overwhelming, but it is essential because it directly impacts well-being. Our panelists will share their experiences and give young adults advice on understanding the various aspects of health insurance.

Health Insurance – Get the Facts
May 18, 2016, 8 PM ET

Click here to register. 

The IDF Young Adult Webinar Series is sponsored by CSL Behring.



Next Round of the Quality of Life Survey Coming Soon
How Does Your Health Compare to the General Population?

On May 2, the next round of the PROMIS-29 quality of life survey will be available to the PI community. PROMIS, which stands for Patient-Reported Outcomes Measurement Information System, was developed to support NIH-funded research. The system’s measures cover physical, mental, and social health and can be used for many chronic conditions.

Using short questionnaires, the PROMIS-29 assesses seven health categories: Physical Function, Pain Interference, Fatigue, Depression, Anxiety, Sleep Disturbance, and Ability to Participate in Social Roles.

In conjunction with the survey, IDF has developed a special reporting feature for individuals with PI. IDF has upgraded the survey so now It will provide survey participants with instant customized reports of how their health compares to the general population. This information can be used as a way to better manage your health, and help healthcare providers better guide your care.

For the first time, the PROMIS Pediatric Global Health item bank (PGH-7), which assesses a child’s overall evaluations of his or her physical, mental, and social health, will also be made available. The PGH-7 is similar to its PROMIS adult counterpart, and 4 of its 7 items are the same as the adult edition.

Children ages 8-17 are included. Please note – NIH has not validated this instrument for children with cognitive limitations or developmental delays preventing them from providing self-reports, such as autism, intellectual development disability, mental retardation, or severe learning disabilities.

The PROMIS-29 and the PGH-7 surveys will be posted on IDF ePHR, so be sure to set up an account at www.idfephr.org to be ready for the live launch date.

If you have any questions regarding this upcoming study, please contact IDF at 800-296-4433 or info@idfephr.org.



Since You Asked
Question & Answer

Question: I am on estrogen therapy and have been diagnosed with CVID. My doctor wants to start IVIG therapy, but I have read there are serious side effects. What should I do?

Question: My doctor wants to learn more about Common Variable Immunodeficiency Deficiency (CVID) and low IgM. I have had some testing, but even my doctor admits to not knowing much about it. How do I know if I have had the correct testing and diagnosis if my doctor is unsure?

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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