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Sorry you couldn’t make it this year! Hope we can finally meet in person at a future conference.

While there is much negativity and divisiveness in the news and our daily lives, for me the SMA conferences display and bring out the positives and best of humanity. A unifying collective spirit towards common goals is something I find uplifting. I was hesitant to attend my first conference back in 2015, but now have attended 3 of the last 4 and…[Read more]

Great pictures by the way. I’ve never been to a conference. Guessing it would be like you suggest not as informational but more social. I probably would still feel awkward as I’m not a social butterfly, but I can see how at least the awkwardness of my disability wouldn’t be an issue. Flying is out, so it would have to be relatively close for…[Read more]

Happy Birthday! I would certainly encourage you to look into Supplemental Security Income (SSI) by contacting the Social Security Administration. You may not have qualified when you were younger depending on your parents income, but you should qualify now. Like I said, you may need to pay your parents rent from it, but it’s still better than…[Read more]

Here’s part 2 of this story. Maybe more stories like this will prompt infant screening.

Again, I can only speak for my state, but the thing about SSI that I really dislike is that it doesn’t incentivize people to work. Like Halsey said, you can work and still receive benefits, but you can’t earn much.  More accurately, you can’t earn enough. I can’t remember all the exact numbers, but here’s the problem. Let’s say I need $2,500 a m…[Read more]

Yes! The normalness of the things that usually make seem strange is awesome! It’s one of the only places where a suction can turn on every five minutes during a seminar, and no one bats an eye!

I can relate to wanting to help my family, especially in stressful situations. I try my best, but sometimes I want nothing more than to be able to give people a great big hug when they’re having a bad day. It sounds like also had some really awesome things happening too though! I’m usually an optimist so I tend to try to focus on the positives as well.

It’s a fantastic event. Still bummed I couldn’t make it. I agree, the best part is that we actually aren’t abnormal for once.

Crystal, I just sent you a private message to, but also wanted to make sure you know that in Indiana you can still work and receive benefits. A portion of what you make would be deducted from your benefits each month, but not all of it. I fully support your choice to focus on your school, but if you ever change your mind, there are still ways you…[Read more]

That’s definitely tough. What do you do, out of curiosity?

Ah ha, I get your concept. Might not work to get it outside, I have to go down a slight ramp, but it would certainly work to go from one table to another.

I’m really struggling lately with everything in this blog. I’m over not being able to help and not having enough energy for fun. The fatigue has improved since Spinraza but it’s still hard working full-time and having 11 hour days.

Wow thank you all so much! My mom ended up not taking the offer, which I’m kinda glad about. I mean, yes, it’d be great to work, but I just don’t really see how it would work out. I mean, I’m still doing school for one thing… I was always sick at school so in 5th grade when I almost died of a sickness, my mom pulled me out of school to home…[Read more]

I use a cover that folds and placed a loop made of string in the hinge, and then I use the string to drag the tablet from one surface (surface to lap, orient the tablet to pickup, etc.) to another. Not perfect.