Kenneth Hobby is the President of Cure SMA, a non-profit that funds research for Spinal Muscular Atrophy and receives funding from the Miller McNeil Woodruff Foundation. We sat down with him to discuss Miller’s impact on SMA research and treatment.
“They’ve just been so amazing with the local community, raising awareness of SMA, other families there, they’ve done so much to support families that get diagnosed with SMA in the local community. There is now a center that we have at one of the hospitals that gives specialized SMA care that was never there before as well, that is now been created and supported by the Woodruffs and the foundation. “
“And then I think the next level of that is what they’ve been able to do to support is on the national scale. Not just locally but with the support that they do from raising the funds which they help us then fund research. So that’s what’s triggered these new approvals. They’ve been a part of that supporting that early research , eight (or) nine years ago, that has helped us push this forward and get now three drugs approved. “
In January of 2019 the Arkansas State Legislature unanimously passed House Bill 1074 that required screening of all newborns for SMA. “Another big thing that we worked on with the Woodruff Foundation as well is, and this has been a key project for the Woodruff Foundation is the newborn screening. Often people wait for the symptoms to show up . And if you’re waiting for symptoms that actually means that those nerve cells are now dying off. If you’re seeing weakness, it means things are already going wrong. And again in SMA when their going wrong you’re not going to be able to bring them back very easily. So what you can do is you can test at birth for SMA before symptoms ever show up. It’s actually the blood spot that’s normally taken at birth and you can test some of that blood for SMA and get a diagnosis. And if you have a diagnosis you can get on to treatment now really within a couple of weeks. “
You can help children with SMA by texting MILLER to 77948 or by clicking here.