Couple renews multi-million dollar commitment to screen newborn babies for SCID disorders

Frustrated with the slow pace of implementation of Newborn Screening for Severe Combined Immune Deficiency (SCID), Vicki and Fred Modell renewed a multi-million dollar commitment to screen every baby born in every state for this life threatening condition, often referred to as "Bubble Boy" disease.

Four million newborns in the United States are routinely screened annually for a variety of conditions. SCID is a life threatening condition in which infants fail to develop a normal immune system. Undetected and untreated, the baby will die before his or her first birthday. But with newborn screening, they can be diagnosed and cured with a bone marrow transplant. The cost of the newborn screening test, called TRECs, is less than $5 and the US Department of Health and Human Services (HHS) described the test as "the National Standard for all Newborn Screening programs."

Three years ago, no states were screening babies for SCID. The Jeffrey Modell Foundation (JMF) contributed over $3 million towards programs for Newborn Screening for SCID, and to date 24 states, the District of Columbia and the Navajo Nation now screen for the condition.

Today, the Modell's committed their funds to "finish the job!"

Vicki and Fred Modell created the Jeffrey Modell Foundation 27 years ago, in memory of their son Jeffrey, who lost his battle with Primary Immunodeficiency (PI) at the age of 15. There are more than 250 genetic defects that are classified under the PI umbrella. The National Institutes of Health (NIH) estimates that at least 500,000 Americans are affected and most are undiagnosed. SCID is the most serious of the disorders and is characterized by experts as a "Pediatric Emergency."

As explained by Vicki Modell, "We have heard from too many grieving parents whose babies were tragically lost to SCID. But now that we can screen and cure babies that are affected, we cannot stand by for another day, and watch precious babies die. We will fight for these babies and offer funding to every state that implements a Population Screening Program for SCID. This is an historic journey, and we hope to wipe out this fatal disease forever."

SOURCE Jeffrey Modell Foundation

 

 

 

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