Natalie Katz, MD, pediatric neurologist and co-director of Duke University’s Children’s Neuromuscular Program, shares her tips for finding trusted SMA specialists and accessing the right support.

It’s a small community when you get to the neuromuscular and folks like myself who care for patients with SMA. 

So sometimes even just asking a friend, or if you know somebody else who’s living with SMA, saying, “Who does your doctor know?” Or, “Does your doctor know anybody in this area?” Or, “Hey Doc, I’m going to be moving out of state or moving to a new city. Do you know anybody in the area?”

So just networking at its core, I think, can be really helpful. But then also going to different websites — reliable websites that have credible information on them — about who is doing what and where. And certainly, Care Centers of Excellence — a lot of those are going to be at major academic institutions. But not everybody can easily access those.

And so there are a lot of community providers who do a fantastic job of caring for these individuals. And that’s where it can be really helpful to just kind of ask around. 

You can also send messages to us, and we can reply back to you with who we know and where, because it does get to be a very small community.

The other trick I have is looking at research papers and seeing who is publishing, because usually there’s a corresponding author on there, and that comes with an email address. So you can email them that way. So that’s my insider trick for getting a hold of people.