On February 13, 2015, the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC) voted “YES!” to recommend to the Secretary of Health and Human Services that MPS I be added to the Recommended Uniform Newborn Screening Panel!
The Committee recommends that every state newborn screening program include a Uniform Screening Panel which includes the disorders selected based on the Newborn Screening: Towards a Uniform Screening Panel and System.
Steve Holland, MPS I parent and Society board member, attended the February 13th meeting and represented not only MPS I families, but all families of children with MPS and related diseases when he told the committee,
“…in a nutshell, it just comes down to time and options. We are all blessed to live in the greatest country in the world where we have the ability to prevent most, if not all, of the permanent damage caused by MPS I by providing parents with treatment options at birth. So let’s do just that.”
Holland’s complete comments
In addition, executive director, Barbara Wedehase, submitted comments on behalf of the National MPS Society,
“By removing the diagnostic odyssey faced by most parents of a child with MPS I, we will reduce the personal anguish parents experience, realizing there are problems but unable to obtain a diagnosis. In addition, the costs of evaluations and testing will be reduced, not to mention time to diagnosis.” Wedehase’s complete comments
This is a huge success, and the Society will submit applications for our other MPS diseases once newborn screening pilot data is available, a requirement of the application. Thank you to everyone who supported this endeavor, in particular the Society’s newborn screening committee: Drs. Joan Keutzer, Lorne Clarke, Paul Harmatz, Paul Orchard and Ron Scott.