Thembelihle Lily Ngcai

Hey everyone! Hope you’re all having a great week.

Check out Michael’s latest video here. He talks about the steps he took for his Evrysdi approval and shares tips for others in the SMA community.

Are you pursuing Evrysdi? Do you have any questions about the process? 

Believe it or not, we’re almost at the end of 2020, finally. It’s been a wild and tumultuous year, but we’ve made it this far.

Since this is such an unusual year, and many of us won’t be able to see family and friends in person, we have to get creative for holiday plans. There will definitely be a lot of virtual hangouts with families, but I’m…[Read more]

Happy Thanksgiving everyone! If you don’t celebrate this holiday or aren’t in the U.S., hope you enjoy the day nonetheless.

It’s no doubt been a wild year, to say the least. In my latest column, I reflect on all that’s happened since March and express my gratitude for the people in my life. Hope you enjoy this one.

Anyone you’d like to say thanks to?

Hey everyone! Hope you’re all having a great week so far.

Check out the latest podcast episode here. In episode 70, we talk with entrepreneur Ron Borgschulte. Ron is the owner of Partners in Medicine, a company that works with Kinova Ro…[Read more]

Yesterday, I had my annual urology checkup. The only part of this I dread quite a bit is the x-ray, mostly because it means I have to transfer out of my chair. I touched on this in my last column, but the transfer process is tough for me these days. It requires whoever’s transferring me to remove my JACO arm and tray, and then reattach both d…[Read more]

Hey everyone! Hope you all had a great weekend.

Check out the latest podcast interview I did here. In spite of all the craziness in our world right now, I hope that this conversation will inspire you in some way. I talked with LaMondré Pough from Columbia, South…[Read more]

Hey everyone! Happy November.

With Thanksgiving and the holidays now right around the corner, I was thinking about caregiver appreciation. It’s been a crazy year for everyone, and our caregivers have really had to go above and beyond for us. I’m very close with my CNA, and I want to show him appreciation, especially now.

Granted, I kno…[Read more]

Hey everyone! Hope you’re all having a great week so far.

Check out the latest podcast here. DeAnn talks about acquiring her new service dog, Horton, and adapting to life with him. She also discusses testing out a JACO robotic arm and getting a new wheelchair. Finally,…[Read more]

Hey everyone, hope you’re all having a great week so far!

Check out Michael’s latest video here. In this episode, he discusses the potential of developing a combination therapy for SMA. This is a topic that researchers have been discussing for some time, and Michael goes into detail here. Hope you…[Read more]

Hope everyone had a great weekend!

So, Halloween is one of my favorite times of the year. I always love dressing up, watching horror movies, and eating plenty of candy. Obviously, the festivities this year will be very different. It’s a bummer that we won’t be able to go to parties or even crowded movie theaters this October.

Still, I’m…[Read more]

Hope everyone is having a great week so far!

Check out the latest podcast here. In this episode, I talk with Maylan Chavez from Miami, Florida. Maylan is an ambassador for the company EyeGaze Inc., which develops eye-tracking technology for people with disabilities.…[Read more]

Happy Tuesday!

Check out Michael’s latest video here. He talks about Scholar Rock’s experimental therapy SRK-015 and its potential impact on the SMA community. This episode is based on an article from our main website, which you can read here. Hope you enjoy all watching this one!

Do you have…[Read more]