SMA advocates across the country are working tirelessly with Cure SMA to educate state decision makers on newborn screening. In Maryland and Minnesota, the states’ Newborn Screening Advisory Committees voted to approve a recommendation to add SMA to the state panel. We now await final approval by both states’ Commissioners of Health.
Illinois, Ohio and Wisconsin
In November, Erik Peterson and Jill Magsam Zmaczynski gave passionate testimony in support of legislation adding SMA to the newborn screening program in Illinois. Dr. Tom Prior at the Ohio State University Medical Center also testified on behalf of adding SMA to the state’s newborn screening pane in Ohio. “It is of the utmost importance that SMA be added to the Ohio newborn screening panel to ensure patients are treated early, before the irreversible loss of motor neurons,” Dr. Prior said.
In Wisconsin, Cure SMA committee member and SMA mom, Dany Sun testified before the Wisconsin Newborn Screening Advisory Committee. “I had to watch my children lose strength with no chance of changing that course. We have that opportunity right now. I am asking that you support the clear evidence that spinal muscular atrophy should be added to the newborn screening panel in Wisconsin to give children the opportunity to live a healthy, strong life,” Sun said.
Pennsylvania House of Representatives Hosts SMA families
Families in Pennsylvania recently spent two days in Harrisburg educating state elected officials about SMA and newborn screening. Allyson Henkel and her son, Peter; Paula Saxon and her two children, Kate and Jake; Hillary Schmid; and Christie Barnard attended an SMA awareness ceremony on the floor of the Pennsylvania House of Representatives.
Comments were also shared with the Pennsylvania Newborn Screening Advisory committee by Peter and Jake. “Despite these challenges, it is possible to have a happy life with SMA. I have a great family, two brothers and a twin sister, lots of friends, and I play on a power wheelchair hockey team. I am here today to support screening babies born in Pennsylvania for SMA. Because of the new treatment for SMA, if babies are treated early they could be much stronger and likely even walk. This would help them avoid many of the challenges I have faced,” Peter said.
Jake talked about his experiences with SMA but he also spoke about his sister who is affected. “Kate is now six years old, but unlike me at this age, she does not require a wheelchair to get around. As a matter of fact she is running, jumping, riding bikes and climbing trees! Spinraza has shown incredible results when given prior to symptoms of SMA starting. My sister, Kate, is proof of this and why it is so important that SMA be added to the newborn screening panel,” Jake said.
As we prepare for 2018, we will continue to share stories of success with state advisory boards and in state legislatures to advance newborn screening. Next year, with the help of Indiana advocate Adrienne Vollmer, legislation is expected to be introduced to add SMA to that state’s panel. We also hope to see several states join Missouri in officially having SMA the list of diseases for newborns. Thank you to all the families who help advocate for these issues. Join Cure SMA and advocate today.