My name is Barb Ballard, and I am the parent of a child who has been diagnosed with SCID. If you are also the parent or relative of such a child, then you need little definition of SCID from me. You most likely already understand the life threatening severity of the disease.
My goal is to maintain a self-help support group, and a resource guide, to other families afflicted with SCID. There are not many such families out there, and the understanding that others have gone through what you are going through, can be not only a comfort, but a saving grace. Some who find this page may feel that they have moved beyond the need for this type of help; however, I implore those persons to reach out and help others who are just beginning to learn what it is to cope with this illness. This community can only grow with the input of those who have an interest in this subject.
There are also times when the voices of SCID families must be heard by HRSA, legislators, physicians, and others. As a group we can make sure we are heard. By staying connected with other SCID families you can be informed of these important events.
I welcome comments or questions from doctors and researchers in the immunologic field, as well as the family members of persons afflicted with SCID. I would like to share information and resources among those interested. The majority of information which this page presents is in the form of links to information outside of this website. The purpose of this is to share the resources which I and others have found. This website is, therefore, an important starting point when looking for online information concerning SCID. Please let me know of any relevant links which you do not find included here.
Most of my personal experience has been through the Pediatric Allergy and Immunology Department at Duke University Medical Center in North Carolina and NIH in Bethesda, MD. I’ve also heard many of the top SCID researchers from around the US and abroad discuss their research to audiences of physicians and families. I have represented SCID families for the Gene Therapy Advisory Committee, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, The Primary Immune Deficiency (PID) Treatment Consortium (PIDTC), and The United States Immunodeficiency Network (USIDNET) .
You can send e-mail to me here: scidemail @ scid.net.
All names of physicians and other medical support personnel have been supplied by various individuals. This list in no way endorses or guarantees the performance of these people, organizations, or groups. It is merely a list of providers who have been helpful to other patients. Please inform me of any links which no longer work.