SCID Compass

Evangelina Padilla, born in with ADA-SCID in 2012, was treated with clinical trial gene therapy and today is a healthy, active 10-year-old.

A new analysis found that immunocompromised individuals were overrepresented in those hospitalized for COVID-19 and that immunocompromised status increased the risk of ICU admission and death once hospitalized.

Dr. Elizabeth Younger sees hundreds of patients who require immunoglobulin (Ig) replacement therapy and no two use the same brand, amount, and type of administration. Ig replacement therapy provides antibodies, specifically immunoglobulin G (IgG), to persons who have low IgG, including those with primary immunodeficiencies.

The agenda is set for the IDF Teen & Young Adult Escape, an opportunity for teens ages 13-17 and young adults ages 18-25 to come together and meet others who understand what it’s like to be a young person with PI. Set for July 22-24 at the Chicago Marriott Oakbrook in Chicago,  the Teen & Young Adult Escape kicks off on Friday, July 22 at 5:30 p.m. with mocktails and a karaoke pizza party and concludes on Sunday, July 24 at 1 p.m. Registration for the event is closed.

The following educational opportunities are jointly provided by Postgraduate Institute for Medicine and PlatformQ Health Education, LLC, working in collaboration with the National Organization for Rare Disorders, Inc. (NORD) and the Immune Deficiency Foundation (IDF).

Learn how congenital athymia is diagnosed and treated, and what causes this rare immunodeficiency by tuning into "Congenital Athymia 101," an IDF forum presented by Dr. Elena Hsieh, University of Colorado School of Medicine Associate Professor of Pediatrics, Section of Allergy and Immunology, and Department of Immunology and Microbiology Director for the Jeffrey Modell Center for Primary Immunodeficiencies.

The Immune Deficiency Foundation (IDF) will host Dr. Elena Hsieh from the Children’s Hospital Colorado for a discussion about congenital athymia, an ultra-rare condition in which a baby is born with no thymus and is unable to produce T cells, making the baby vulnerable to life-threatening infections.

A chronic granulomatous disease (CGD) carrier study that involved the Chronic Granulomatous Disease Association of America (CGDAA) and the Primary Immune Deficiency Treatment Consortium (PIDTC) shows that female CGD carriers suffer from the same symptoms as those diagnosed with the disorder and recommends that CGD carriers seek diagnosis and treatment through specialists such as immunologists.

While IDF is not a medical system or healthcare provider, we take protecting constituent data and privacy very seriously. We have implemented a new protocol to encrypt any emails that contain either personal health information (PHI) or personally identifiable information (PII).

Cindy Cutshall-Kisik, the second person in the world to receive gene therapy for ADA-SCID, is now an advocate for mental health awareness, working to educate children and young adults on the importance of sharing when they are sad or anxious.