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Are you aware July is Disability Pride Month?  The younger me would roll my eyes at this.  Now though I think taking pride and owning your disability goes a long way in others accepting differences as well.  For me one way to do this is by living life.  A prime example of this is Katie Napiwocki.  In her latest column she shares how she met her…[Read more]

Hey all. On behalf of the moderators here, we first want to thank you for being a part of our forum community. It has truly been an honor getting to know you and build relationships based on one commonality we all have— spinal muscular atrophy.

That being said, we wanted to check-in and get your feedback. Do you have any suggestions on how we c…[Read more]

Hi everyone!

So, COVID cases are on the rise across the country. However, my family recently decided to bring caregivers back into the house on a week-by-week basis. We’re taking plenty of precautions, including masks, gloves, and social distancing. Also, my dad is taking care of my personal hygiene, so the PCAs don’t have to get too close to…[Read more]

Hey everyone! 

So, I’m keeping it real is the theme of this video. I don’t think people realize how stressful the current situation is for those of us considered “high-risk.” After deciding to start the process for a new wheelchair, the situation became real.

I’ve been doing well in my extende…[Read more]

I may not know who you are or what you’re all about, but if I were to guess I’d say you’ve had some awkward encounter with a child out in public.

Whether it was incessant staring, a comment made, or pointed fingers in your direction, children have an interesting way of expressing themselves when it comes to a person with a disab…[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]

Lately I feel a lot of discontent. Probably most of it has to do with the current situation. Not only have I been in “hibernation” since November, I have to weigh the risk of every action. Also, some of it has to do with my physical limitations. There are so many things that I would do if I could. Despite those feelings I’m trying to look…[Read more]