Primary Immune Tribune
September 2013
Marcia Boyle Named Innovator of the Year
IDF President & Founder Recognized by Maryland Daily Record

IDF President & Founder, Marcia Boyle, was chosen as one of the winners of the 2013 Innovator of the Year Award of The Daily Record, a Maryland newspaper for business and legal news. This award recognizes the men and women who have created new products, services or programs that have improved their fields. CLICK HERE to read more.

To celebrate the award, Marcia encourages members of the IDF community to support this fall’s Walk for Primary Immunodeficiency. This is the inaugural year for IDF’s team-based fundraising and awareness initiative Walk for Primary Immunodeficiency, including Philadelphia, Los Angeles, Chicago and a Nationwide Virtual Walk. If you do not live near any of these sites or you are not creating a team of your own, join or support “Team Marcia” at Chicago, Philadelphia, or at the virtual walk! Join “Team Marcia” and help IDF!



Walk for Primary Immunodeficiency
Register Today!

IDF’s first annual Walk for Primary Immunodeficiency season is coming up soon! Register for walks in Philadelphia, Chicago, and Los Angeles, or join us around the country at the Nationwide Virtual Walk. Visit  www.walkforPI.org for more information.

Greater Philadelphia - September 29, 2013 - Penn’s Landing - Philadelphia, PA
Greater Los Angeles - October 19, 2013 - El Dorado Regional Park - Long Beach, CA
Greater Chicago - October 27, 2013 - Cantigny Park - Wheaton, IL

Many thanks to all of our volunteers, walkers and sponsors. Special thanks to Baxter Healthcare Corporation, our National Presenting Sponsor.

We hope to see you there! If you have any questions, please email walk@primaryimmune.org or call 1-800-296-4433.



Primaryimmune.org Redesigned
New organization, New Menus, Now Mobile Responsive

Visit www.primaryimmune.org today to see our newly redesigned website. The site boasts an enhanced menu system, patient life stage sections, easy-to-navigate video pages, and more. Most importantly, it is now mobile responsive. We found that over 40% of people were accessing our site with smartphones and tablets, so we redesigned it to make it mobile responsive. So whether you are on a desktop computer, laptop, tablet or smartphone, the new design conforms to your device. Visit www.primaryimmune.org today to see all that the Immune Deficiency Foundation website has to offer. The IDF website is supported by a charitable donation from Grifols.


IDF Teen Escape
Needham, MA
IDF Teen ESCAPE  – Needham, MA
 
IDF invites all preteens and teens, ages 11 to 18, diagnosed with a primary immunodeficiency (PI) to an IDF Teen Escape! This exciting, free event is scheduled on November 9-10, 2013 at the Sheraton Needham Hotel in Needham, MA. To register, e-mail idfteenprogram@primaryimmune.org.  
 
The IDF Teen Escape weekend is an opportunity to acquaint preteens and teens diagnosed with PI with others like themselves. This weekend is filled with fun activities designed to promote friendship, build leadership skills and develop coping abilities. Age appropriate sessions will be presented by medical and life skills experts. Attendees will discuss what it means to live with a PI with other participants and focus on transition and advocacy issues. There will be separate parent sessions that offer opportunities for parents to network and share ideas.

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Clinical Focus on Primary Immunodeficiencies: Chronic Granulomatous Disease
Download or Order Today
The New Clinical Focus on Primary Immunodeficiencies: Chronic Granulomatous Disease outlines symptoms and diagnosis, as well as treatment and management of Chronic Granulomatous Disease (CGD). CGD is a genetically determined disease characterized by an inability of the body’s phagocytic cells to make hydrogen peroxide and other oxidants needed to kill certain microorganisms. Because of this defect in phagocytic cell killing, patients with CGD have an increased susceptibility to infections caused by certain bacteria and fungi. The condition is associated with excessive accumulation of immune cells into aggregates called granulomas at sites of infection or other inflammation. This publication was made possible by an educational grant from Vidara Therapeutics.

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International Plasma Awareness Week
October 13-20

IDF is proud to support the first International Plasma Awareness Week (IPAW), October 13-20. This is a joint initiative of the Plasma Protein Therapeutics Association (PPTA) and its member companies. IPAW is designed to:

- Raise global awareness about source plasma collection
- Recognize the contributions of plasma donors in saving and improving lives
- Increase understanding about lifesaving plasma protein therapies and rare diseases

Member companies are planning a variety of activities including: donor appreciation events, as well as, open houses for patients, government officials and the media at over 450 plasma collection facilities in Europe and the U.S. In addition, patient organizations representing individuals with rare diseases, like IDF, have pledged support for the event.

As PPTA celebrates the generosity of plasma donors and works to raise awareness for the rare diseases during IPAW, we encourage everyone to thank donors who help to ensure a higher quality of life for patients around the world.

To learn more, visit http://www.pptaglobal.org/meetings-events/international-plasma-awareness-week/overview



SCID Educational Materials in Spanish
IDF Creates Spanish Materials for SCID Patients

Patients, families and healthcare providers rely on IDF for quality educational materials that focus on understanding and treatment of primary immunodeficiency diseases. With the increasing prevalence of newborn screening for SCID throughout the country, IDF saw a need for guides that explained the meaning of an abnormal screen for SCID and a diagnosis of SCID, and those publications are now available in Spanish.

The two guides for parents have been developed by IDF and medical experts in SCID with the help of the New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC). The brief one page guide for abnormal screens is designed as an online resource with editable text fields so that states can include their own relevant contact information. Similarly, the guide for parents who learn that their child has a definitive diagnosis of SCID is available online and as a printed version. This guide includes space on the back allowing states to add their own information.

These publications are utilized throughout the country to supplement the follow up procedures in states that are screening newborns for SCID. Following mounting requests, IDF is proud to introduce Spanish language versions of these materials!

Both the English and Spanish versions of the guides can be ordered on the publications page of the IDF website: http://primaryimmune.org/about-primary-immunodeficiency-diseases/idf-publications.

These educational materials were supported by the IDF SCID Initiative and SCID Angels for Life Foundation.



Since You Asked
IDF Question and Answer

Q:  I have been told two different things and am confused as to what my diagnosis is. I was first told that I was tested and the antibody responses to vaccines that were checked were adequate, and that this suggested that even if one or more IgG subclasses were low, this would not result in any immunodeficiency as my total Igg function is fine. I saw another physician who states that I have IgG subclass 2 deficiency which is confirmed by direct testing of subclasses. Can you please clarify this for me? How do I establish a treatment plan with immunoglobulin?

Q:  Each time I do a subcutaneous infusion, it seems to take a different amount of time. Sometimes sites fill faster or slower than I expected. I want to be able to plan my infusion around my life, not the other way around. How do I get predictable SCIG infusions?

Click "FULL STORY" to see the answer to this question.


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Primary Immune Tribune is sponsored by an educational grant from Grifols


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