Convaid | R82 shares the news that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for Spinal Muscular Atrophy be implemented nationwide, according to our community partners Cure SMA. Cure SMA advises that this decision is an important step toward their goal of having every baby born in the United States screened for SMA.
“We are extremely grateful that, after a thorough review of the evidence, the committee has confirmed that universal newborn screening and early treatment will change the lives of babies born with SMA. SMA is currently the leading genetic cause of death for infants under two years of age, but newborn screening presents an historic opportunity to changes that. We look forward to Secretary Azar’s speedy approval of this recommendation,” a Cure SMA spokesperson said.
Convaid | R82 participates in the Cure SMA National Conference as a Platinum Exhibitor and supports Cure SMA galas, Walk-n-Rolls and other Cure SMA functions.
Cure SMA said that they would work alongside their advocates to push for a quick approval by HHS Secretary Azar which would include working with Cure SMA partners in the House of Representatives and Senate to encourage Secretary Azar to act. By law, the Secretary has 120 to approve the recommendation.
Convaid | R82 Call to Arms
In support of Cure SMA, Convaid | R82 asks our community help in continuation of advocacy in all 50 states, as the final decision on implementation rests with each individual state. If you wish to join Cure SMA’s advocacy, please follow this link. Cure SMA will notify you of opportunities to advocate in your state or district.
Cure SMA lobby partners include the SMA Newborn Screening Coalition consisting of Biogen, AveXis and Genentech/Roche.