IDF SCID Initiative

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 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

• SCID Newborn Screening Campaign and the IDF SCID Newborn Screening Toolkit
• 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.

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

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
40 W. Chesapeake Avenue
Suite 308
Towson, MD 21204

Resources

SCID, Angels for Life

SCID.net

• Sigma-Tau Pharmaceuticals Inc. Offers New Co-Pay Assistance Program for Adagen Patients
• Gene Therapy Treatment for SCID
• WI Public Health Lab Identifies First SCID Baby Using New TREC Assay
• Rotavirus Vaccine Contraindicated in Infants with Severe Combined Immunodeficiency
• Secretary of Health and Human Services Announces Addition of SCID To National Newborn Screening Standards.
• IDF Advocate, Spring 2010 Newborn Screening for SCID
• IDF Praises ACHDNC Recommendation for SCID Screening in Newborns
• Testimony of the IDF – 17th Meeting of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children
• Testimony of Barbara Ballard – 17th Meeting of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children
• Testimony of Stacey Barrett – from January 21, 2010 ACHDNC
• Volunteer Activities – SCID, Angels for Life, IDF ADVOCATE – Fall 2009
• “Closing Doors on SCID, Opening Hope on Treatment,” IDF ADVOCATE – Fall 2008
• IDF SCID Initiative – IDF Advocate, Summer 2008