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Purpose This study will evaluate the safety and effectiveness of insulin-like growth factor-1 (IGF-1) to treat patients with X-linked severe combined immunodeficiency (XSCID). Those who have XSCID lack white blood cells that protect their bodies from invasion by all types of germs. IGF-1 is the main hormone responsible for the body’s growth and metabolism. As a medication, IGF-1 is Increlex[(Trademark)] (mecasermin), Patients ages 2 to 20 who have not yet begun puberty, have a... Read Full Story

LISA MAYORGA: Thankful for early warning By Lisa Mayorga Saturday, Sep. 17, 2011 | 12:00 AM Modified Fri, Sep 16, 2011 03:15 PM My granddaughter, Annalou Bojorquez, was born at Clovis Community Hospital on Oct. 9, 2010, with an often fatal immune deficiency called Severe Combined Immunodeficiency or SCID. At birth, Annalou weighed 7 pounds, 1 ounce, and appeared to be a healthy baby. Prior to leaving the hospital, she underwent all newborn screening tests that were made available to... Read Full Story

‘It was a miracle’: Toddler saved by cord blood transplant in S.A. . by Wendy Rigby / KENS 5 Posted on September 12, 2011 at 11:23 AM SAN ANTONIO — Her parents call her their “miracle child.” A South Texas baby has a second chance at life thanks to a successful cord blood transplant in San Antonio. At 10 months old, Valentina DeLeon’s parents knew there was a problem. She weighed only 13 pounds. She was a sickly child with a frightening diagnosis: severe combined immunodeficiency... Read Full Story

Gene therapy works for ‘Bubble Boy’ disease (WebMD) Nine years after getting gene therapy for a rare, inherited immune system disorder often called “bubble boy disease,” 14 out of 16 children are doing well, researchers report. The children were born with severe combined immunodeficiency disease (SCID). They got an experimental gene therapy in the U.K. A new report shows that nine years later, 14 of the 16 children had working immune systems and were leading normal lives. “These... Read Full Story

‘Bubble Boy’ Kids Living Normally After Gene Therapy: Study By Amanda Gardner HealthDay Reporter WEDNESDAY, Aug. 24 (HealthDay News) — More than a dozen children with so-called “bubble boy” disease are alive and well, with functioning immune systems, nine years after undergoing gene therapy to correct their disorder, researchers report. Most of the patients attend school with other children, something that probably would have been fatal without treatment. “The promise of gene... Read Full Story

Governor Scott in Florida line item vetoed SCID Newborn Screening, even though the Newborn Screening Committee for Florida voted unanimously to start screening.  Let’s tell Governor Scott he was wrong.  You do not need to be a Florida resident to sign the petition. CLICK NOW   to sign! Read Full Story

CS Mother Pushing for SCID Screening in Texas Having a child is one of life’s greatest gifts. But, imagine having that gift taken away after only nine months. That’s what happened to one College Station family. Their seemingly healthy baby boy died in March from a disease rarely diagnosed, but treatable. Now his mother is on a mission to raise awareness and save babies lives. “He was just a really sweet, sweet little baby,” mother Jennifer Garcia said. For the first seven months... Read Full Story

Pioneering surgery gives Lincolnshire seven-year-old ‘new lease of life’ WITH a cheeky smile and bucket-loads of energy, little Toby Booth seems like any other child as he plays at home. But the 7-year-old has more reason than most to be cheerful following life-changing surgery for a condition that affects only a handful of children in the world. Toby suffers from Severe Combined Immunodeficiency (SCID), which puts him at risk of life-threatening complications, including organ damage... Read Full Story

Family pushing for SCID screening   ORLANDO, Fla. (WOFL FOX 35) – A family continues to grieve over the loss of a newborn child who fell victim to a rare, but treatable, disease.  They are also taking on a cause which they hope will help save the lives of others. Kyle Harden, who is still devastated by the deathof his daughter Annabelle, says he has yet to wash her clothes because the smell brings comfort and motivation. Little Annabelle died of Severe Combined Immunodeficiency... Read Full Story

Newborn Screening for Deadly Immune Disorder SCID Possible Due to UCSF Research By Jeffrey Norris on March 21, 2011 Since last August, all newborns in California have been screened for a deadly immune disorder as part of a pilot program, but a newly introduced state assembly bill would make this screening routine. About a dozen infants are born in California each year with the disease, called severe combined immunodeficiency (SCID). Screening enables the diagnosis and treatment of... Read Full Story