The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Seven-year-old Ava George, who has severe combined immunodeficiency (SCID), and her parents—Erica Billy and Terrance George—are one of several families highlighted in a recently released documentary film series, “Ending Disease: The Stem Cell, Anti-Cancer T-Cell, & Antibody Revolution in Medicine.”
“Ending Disease” is a four-part film series that examines how FDA-approved clinical trials cure, or put into remission, devastating diseases and injuries using stem cell, CAR-T cell, and antibody therapies. The film focuses on treatments for SCID, brain cancer, breast cancer, leukemia, lymphoma, HIV, spinal cord injury, and eye disease.
Medical professionals and families allowed film director Joe Gantz and his production crew to document 10 clinical trials at research facilities across the United States. Ava George participated in one of those trials.
Ava was diagnosed with SCID at five months old. Critically ill, she received her first lifesaving hematopoietic stem cell transplant (HSCT) in clinical trials at the University of California, San Francisco Benioff Children’s Hospital. She also underwent a second HSCT as a toddler. Because of the stem cell therapy, Ava is now a thriving, healthy child.
Ava’s mother Erica is a member of IDF’s SCID Compass Parent Advisory Board, and she has contributed to SCID Compass by sharing her family’s story.
“Having a child who has benefited from stem cell research previously, it makes my heart smile to see continuous advancements being made and I’m in awe of each of the families featured in this film,” said Heather Smith, president and founder of SCID Angels for Life Foundation. Smith also serves as chairperson of the SCID Compass Steering Committee and the SCID Compass Patient Advisory Board.
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