-
Kevin Schaefer started the topic The SMA News Today Podcast 47: James Ian in the forum Adults With SMA 4 days, 1 hour ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of the SMA News Today podcast here. I interviewed James Ian, a musician and actor who has SMA Type 3. He currently lives and works in Los Angeles, California.
We met at this year’s Cure SM…[Read more]
-
Kevin Schaefer started the topic Motivation Monday: Social Media in the forum Disability in Media 4 days, 22 hours ago
Hey everyone! Hope you all had a great weekend. For those in the U.S., hope you all enjoyed the Thanksgiving holiday.
For today’s Motivation Monday topic, I wanted to talk about how we might use social media as a source of inspiration. While there is plenty of negativity on various social media platforms, there are positive things as well.…[Read more]
-
Kevin Schaefer replied to the topic Using the JACO Robotic Arm to Make Coffee in the forum The SMA News Today YouTube Channel 1 week, 2 days ago
DeAnn, Alyssa, join the SMA cyborg army!
-
Kevin Schaefer started the topic Using the JACO Robotic Arm to Make Coffee in the forum The SMA News Today YouTube Channel 1 week, 3 days ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of “Ryan’s Robotics” here. In this video, Ryan demonstrates how he uses his JACO Robotic Arm to make coffee. It’s a simple, yet powerful, example of how this device makes Ryan more independent e…[Read more]
-
Kevin Schaefer replied to the topic Risdiplam in the forum Diagnosis Information and General Questions 1 week, 3 days ago
Hey Lupa, thanks for the heads up. Our news team is fixing this.
-
Kevin Schaefer replied to the topic Sad News in the forum Adults With SMA 1 week, 4 days ago
So sorry for your loss DeAnn. I always enjoyed Roy’s appearances in your videos, and my heart goes out to you.
-
Kevin Schaefer started the topic Motivation Monday: Gratitude in the forum Raising Awareness of SMA 1 week, 4 days ago
Hey everyone!
Since we celebrate Thanksgiving this week in the United States, I wanted to talk about gratitude for today’s Motivation Monday topic. I know those “five things I’m grateful for” lists are super cheesy, but nonetheless I think it’s important to recognize the things in our lives that bring us joy. As this article in Psyc…[Read more]
-
Kevin Schaefer started the topic Columnist Writes About The Art of Rejuvenation in the forum Adults With SMA 2 weeks, 2 days ago
Hey everyone! Hope you’re all having a great week.
Check out my latest column here. I know I’ve written about this before, but sometimes I struggle to find a good work/life balance. Rest and rejuvenation are crucial for anyone, but especially for those of us with SMA. It’s a lesson I often need to remind myself of.
Fortunately, the North…[Read more]
-
Kevin Schaefer started the topic The SMA News Today Podcast 46: Roundtable Discussion November 2019 in the forum Raising Awareness of SMA 2 weeks, 4 days ago
Hey everyone! Hope you’re all having a great week so far.
Check out the latest episode of the SMA News Today Podcast here. In this roundtable discussion, Michael and I talk about several recent news stories and columns. The first story we look at is a…[Read more]
-
Kevin Schaefer started the topic Motivation Monday: Reading in the forum Adults With SMA 2 weeks, 4 days ago
Hey everyone! Hope you all had a great weekend.
For this week’s Motivation Monday post, I have a simple, but important topic. Anyone who’s seen my posts here or read my columns knows that I’m a bookworm. I’ve made it through some of the hardest times in my life by reading. Books and stories have the power to inspire, teach, entertain, m…[Read more]
-
Kevin Schaefer started the topic Having a High Quality of Life While Living With SMA in the forum Adults With SMA 3 weeks, 3 days ago
Hey everyone! Hope you’re all having a great week so far.
Check out my latest column here. I recently had a couple friends on the SMA News Today Podcast, and we spent a lot of time talking about their late son Carson. Carson was a friend of mine, and it was cathartic for me to talk with his parents about his life.
Among other things, w…[Read more]
-
Kevin Schaefer started the topic Motivation Monday: Parenting With a Disability in the forum SMA Parents and Caregivers 3 weeks, 4 days ago
Hey everyone! Hope you all had a great weekend.
For today’s Motivation Monday topic, check out this article from the MDA Quest magazine. The author is a woman with SMA, and a few years ago she and her husband adopted a child who also has SMA. She writes about the unique relationship she and her son have, and how others perceive i…[Read more]
-
Kevin Schaefer replied to the topic I'm Kinda Scared in the forum Adults With SMA 3 weeks, 5 days ago
Thanks for keeping us updated Crystal! Let us know if there’s any other way we can help.
-
Kevin Schaefer replied to the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 3 weeks, 5 days ago
It really is surreal. I’m curious too, since you started Spinraza before any of us, have you noticed any effects lately? What have your energy levels been like?
-
Kevin Schaefer replied to the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 3 weeks, 5 days ago
Totally agree. It’s like I was brought along to all of the MDA and SMA fundraisers when I was a kid, but I never thought about the research seriously benefitting people in our generation. Back when Zolgensma got FDA-approved, I wrote another column about what these advancements mean for us. Check it out here.
-
Kevin Schaefer started the topic Columnist Writes About Existing and Emerging Treatments in the forum Raising Awareness of SMA 4 weeks ago
Happy Friday everyone! Hope you all have had a great week.
Check out my latest column here. I wrote about existing and emerging treatments for SMA, and how surreal it all is. At times I don’t even know what to think, especially because I never gave the future of SMA much thought when I was growing up. It’s a lot of mixed emotions for me…[Read more]
-
Kevin Schaefer started the topic The SMA News Today Podcast #45: Jim and Becky Berry in the forum SMA Parents and Caregivers 1 month ago
Hey everyone! Hope November is off to a good start for you all.
I’m proud to present the latest episode of the SMA News Today Podcast right here. This is a heavy conversation, as I talk with my friends Jim and Becky Berry, who lost their eldest son Carson last y…[Read more]
-
Kevin Schaefer replied to the topic Columnist Writes About Embracing the Spirit of Halloween in the forum Adults With SMA 1 month ago
Yeah I have plenty of family members who are already in Christmas mode too. For me it’s Star Wars season lol.
And thanks!
-
Kevin Schaefer started the topic Motivation Monday: Journaling in the forum Adults With SMA 1 month ago
Hey everyone! Hope you all had a great weekend!
For today’s Motivation Monday topic, I wanted to talk about keeping a journal. In high school I started to journal regularly, and it’s always been a very cathartic form of expression for me. Just writing out my thoughts helped me get through some tough times, and it made me feel good no matte…[Read more]
-
Kevin Schaefer replied to the topic New Forums Moderator Here! in the forum Adults With SMA 1 month ago
Welcome aboard! Excited to have you here, and to get your input on a wide range of subjects.
Have a great weekend everyone!
- Load More