DeAnn R

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]

In Michael’s latest video, he talks about the process of acquiring a new wheelchair. It’s been years since he’s had to do this, and he would appreciate any input from members of this community. Hope you all enjoy this video!

I’m sure all of us know from experience that this can be an exhau…[Read more]

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

I wanted to let you all know that Cure SMA is hosting a virtual conference this week, since they had to cancel their in-person one this year. You can find all the details for workshops, dates, and times here. You’ll need to register for each session individually. Feel free to contact Cur…[Read more]

Happy Tuesday everyone! Hope you all enjoy the latest podcast here.

In episode 59, I talk with our very own Brianna Albers. Brianna talks about quarantine, values-based living, and how she’s keeping herself occupied during the COVID-19 pandemic. It’s easy to wonder…[Read more]

Hey everyone! Hope you all are staying safe and healthy.

So since 2020 has been a constant stream of uncertainty and bombshell news stories, we’ve all had to adapt to a new normal. Originally, I had a bunch of plans for this summer. I was planning on the Cure SMA conference in Orlando, a Comic-Con out of town, and regular outings with f…[Read more]

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

Check out my latest column here. I wrote about my thoughts regarding risdiplam, and whether or not I would switch treatments. Personally, I’m not in any rush, but I’m excited for the number of options we’ll soon have. My plan is to wait and see how other adults who are on Spinraz…[Read more]

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

Check out my latest column here. I wrote about experiencing pre-Spinraza injection fatigue, which we’ve talked about here before. I go in today for my latest injection, and my body is definitely ready for it. It’ll be nice to get a good energy boost.

Do you all also feel fatigue the close…[Read more]

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

In episode 58, the SMA News Today team talks about how the COVID-19 pandemic is impacting our Spinraza appointments and other medical procedures.…[Read more]

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

So, even though most of us are still on lockdown, I think it’s still important to set personal goals. I’ve seen a lot of people engage more in creative activities and take up new hobbies. Plus, personal goals can also apply to strengthening relationships and focusing on our phy…[Read more]