The IDF SCID Initiative was established as a project dedicated to address the acute need for a program for Severe Combined Immune Deficiency (SCID) education, awareness,and diagnosis. SCID, a type of primary immunodeficiency disease, is commonly known as bubble boy disease. Affected infants lack T lymphocytes; the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants will likely die before their first birthday.

Mission

The mission of the IDF SCID Initiative is four-fold:

• To expand public awareness of SCID and the treatment options among families, physicians, and the general public.
• To increase the probability of early detection and treatment, with the goal to have universal newborn screening for SCID performed on every infant born in all 50 states.
• To fund research efforts that will identify new treatments, therapies, and ultimately a cure for SCID
• To provide opportunities for affected individuals and families to attend educational events with physicians and other affected families.

Current Programs

To contact IDF about any of the programs listed below, email idfscidinitiative@primaryimmune.org.

• SCID Newborn Screening Campaign and the IDF SCID Newborn Screening Toolkit. Click here to visit the IDF SCID Newborn Screening blog.
• SCID: A Guide for Parents on an Abnormal Screen and SCID: A Guide for Parents Following Diagnosis
• Distribution of educational brochure for health care providers about the dangers of administering the Live Rotavirus Vaccine to infants with SCID - Infants with SCID should NOT receive Live Rotavirus Vaccine
• Scholarship opportunities for SCID families to attend IDF National and Regional educational programs.
• Partnership with SCID, Angels for Life Foundation to raise awareness, benefit research, and provide parent and family education for those affected by SCID.

The Story of David

David Vetter, affectionately known as the boy in the bubble, was born with SCID. At the time of his birth in 1971, a bone marrow transplant from an exact matched donor was the only cure for SCID, but there was no match available in David’s family. For 12 years, David captured the world’s attention as he lived in protected environments to maintain relatively germ-free surroundings at Texas Children’s Hospital. Click here to read more about David.

Donate Today

IDF has developed an oversight committee for the SCID Initiative fund, comprised of community members with specialized interest and knowledge specific of SCID. To contribute to the IDF SCID Initiative, you can donate now online, or mail your contribution to: IDF SCID Initiative 110 West Road, Suite 300 Towson, MD 21204

Resources

Supplemental Materials

Click here for articles, testimony and other documentation regarding SCID and the IDF SCID Initiative.