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It is with great sadness that the Immune Deficiency Foundation (IDF) shares the news that Sara LeBien died January 14, 2018.
Sara and her husband Bob were integral in the founding of IDF. They, like the other families and physicians involved in the early days, saw the need for a national organization dedicated to improving the diagnosis and treatment of people with primary immunodeficiency diseases (PI) after their son Mike was diagnosed.
A new type of gene therapy pioneered at St. Jude Children's Research Hospital appears to build fully functional immune systems in babies born with the so-called "Bubble Boy" disease, offering hope of a permanent cure for kids who otherwise might die before their second birthdays. Click here to read the full article.
IDF State Advocacy in the New Year
With the new year approaching, many state legislatures will convene to consider thousands of potential new laws. IDF will continue its state policy work during the upcoming legislative sessions by focusing on efforts in multiple states addressing barriers to medication access, including Iowa, Massachusetts, Michigan, Nevada, New Jersey, Ohio, Oregon and Pennsylvania.
Thank You to Those Who Walked with Us
As the year ends, so does the IDF Walk for PI 2017 season. This year’s walks were successful and brought together our IDF community, and we owe it all to you: our walkers, donors, volunteers, sponsors and all who helped support the walks. Your efforts allow IDF to keep taking steps forward towards a better future for the PI community.
Participate in the IDF Fever Study: Coming Early 2018
IDF has an exciting research project that developed from discussions in the IDF PI CONNECT Research Forum and IDF Friends. Many individuals with PI report having a lower than normal average body temperature. As a result, when they do have signs of an infection, frequently their temperature does not rise to 100.4°F, the threshold upon which doctors begin to prescribe antibiotics. If this occurs, patients who have infections may not receive critical antibiotics due to missed signs of fever.
These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
Question: I have Specific Antibody Deficiency (SAD) and am concerned that I will get the flu despite getting vaccinated. If I do get the flu am I able to take Tamiflu?
IVIG Study Opportunity
The CIIC (Consortium of Independent Immunology Clinics) is currently conducting an IVIG study for a 12-month period. They are looking to enroll children ages 2-16 for the study.
- The study will cover the costs of the IVIG
- Participants will also receive a stipend for each visit to the clinic
This is an immediate opportunity for people in the following areas:
The Immune Deficiency Foundation, in cooperation with the Center for Biologics Evaluation and Research (CBER) of the Food and Drug Administration (FDA), the Plasma Protein Therapeutics Association (PPTA), and the National Institute of Allergy and Infectious Diseases (NIAID), participated in the Workshop on Immune Globulin Potency in the 21st Century, November 8-9, 2017.