Kevin Schaefer

Happy SMA awareness month everyone!

Here at SMA News Today, we’re doing something special to commemorate this time of the year. Everyday in August, we’re featuring a different person in the SMA community. This project is called 31 Days of SMA, and it’s something we did last year as well. Contributors include teens and adults with SMA, parent…[Read more]

Dear Forum Members,

We at SMA News Today are dedicated to meeting the informational needs of this community. We are always striving to collect information to serve you better! Please take a moment to complete our one question poll below. This will help us better tailor the information we publish as it pertains to spinal muscular atrophy (…[Read more]

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

Check out my latest column here. I wrote about my mom’s recent knee replacement surgery, and how we’ve had to adapt accordingly. Normally my mom helps me during the day. Thankfully she’s doing a lot better, but it’s still been an adjustment. I also wanted to show my appreciat…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

Check out Michael’s latest video here. If you’ve followed his videos lately, you’ll know that he’s switching from Spinraza to risdiplam. He talks more about his decision here, and how his last injection went. Hope you all enjoy!

Do you…[Read more]

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

Check out the latest podcast episode right here. I chatted with my friend Shawn Stewart, who I met during last year’s Cure SMA conference in Anaheim. Shawn lives in southern California with his wife and family, and…[Read more]

Hey everyone! Hope you all had a relaxing weekend.

Like many people, I’m definitely feeling more drained and anxious lately. Being an extrovert, I’m having a hard time with extended hibernation. Some days are better than others, but it’s still a struggle.

However, one thing that has helped me is having a couple close friends over for soc…[Read more]

Hey everyone! Hope you all had a great weekend.

So, following up on DeAnn’s post from Friday, I think it’s fair to say that many of us have been in a funk lately. It’s been a tough year, and we’re all pretty drained from hibernation mode. I know I’ve been feeling this way lately, and I’ve been feeling more tired than usual. For those of you wh…[Read more]

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

Check out the latest podcast episode here. In episode 61, the SMA News Today team shares some highlights from the 2020 virtual Cure SMA conference. We discuss webinar presentations, research u…[Read more]

Hey everyone! Hope you all had a safe and relaxing weekend.

So, July is Disability Pride Month! The month coincides with the anniversary of the Americans with Disabilities Act of 1990. This is a time to celebrate people with disabilities, and to advocate for a more inclusive world. You can read more about it here.

I write and talk about…[Read more]

Hey everyone! Hope you all had a great weekend.

I’m curious if any of you have a summer reading list, and any recommendations. I’ve been trying to do a mix of fiction and nonfiction lately. Recently, I finished “To Live Woke” by Dr. Rupert Nacoste, which offers a poignant look at interpersonal relationships in modern America. I highly rec…[Read more]

Hey SMA community! Hope you’re all having a fantastic day.

Last year, we developed an initiative called 31 Days of SMA. We did this in recognition of SMA awareness month in August. Check out the archives here. We featured a range of stories from people in the SMA community, from adults to caregivers to physical therapists. This August, w…[Read more]

Hey everyone! Hope you all had a great weekend. Happy belated father’s day to all the Dads out there!

I wanted to share Michael’s latest video with you all. This is one of the most important videos we’ve made, as Michael discusses his decision to switch from Spinraza to risdiplam. As Michael state…[Read more]

Hey everyone! Hope you’re all doing well.

Check out Michael Casten’s latest column here. He wrote about celebrating his daughter’s golden birthday. Though it was different this year in light of the stay-at-home guidelines, his family still had a good time. Ella had socially distanced visits with friends, a family dinner, s’mores, and pre…[Read more]

Hey everyone! Hope you’re all having a great week so far. Check out the latest podcast episode here.

I chat with George Corbin from Neptune, New Jersey. George is a graduate of Temple University, and he has SMA type 3. Currently, he works as a mortgage loan o…[Read more]