Raising Awareness For Rare Genetic Disorder
December 26, 2012 6:47 PM
On Wednesday, a Sioux Falls family who lost their daughter to a rare genetic disorder hosted a fundraiser at Suburban Lanes to raise money and awareness for the cause.
The disorder is called “Severe Combined Immunodeficiency,” which causes defects in the immune system and could lead to uncontrollable infections.
Jeremy Penn hosted the event in honor of his daughter Samantha, who passed away at just 20 months, and said he hopes to see required newborn screening for this disorder statewide.
"If you catch it early, it's very treatable and the treatment is a bone marrow transplant and the survival rate for individuals caught early is over 90 %," said Penn.
Penn’s fundraiser drew in 40 people and raised just over $300.00; the money raised will go towards the Immune Deficiency Foundation.
Only nine states have fully implemented mandatory newborn screenings for SCID and South Dakota is not currently one of them.