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DeAnn R started the topic What did you think of the Cure SMA conference? in the forum Adults With SMA 59 seconds ago

For the second time the Cure SMA conference was virtual. Although it doesn’t have the same energy as a live conference, it was well thought out. With a mix of social activities and informational seminars it was sure to please. Because I’ve never been to a live conference I can’t compare. What did you guys think? I enjoyed seeing familiar…[Read more]
Kevin Schaefer started the topic Podcast 83: Conversation with Magic Wheelchair Executives in the forum Flash Briefings and Podcasts 2 hours, 7 minutes ago

Hey everyone! Hope you’re all doing well.

Check out the latest podcast episode here. I chatted with my friends Scottie and Christine from Magic Wheelchair. Give it a listen and let me know what you think. Thanks!
Yvette Haas replied to the topic Using a BiPAP in the forum Adults With SMA 10 hours, 16 minutes ago

If you have trouble with the humidity condensing, try covering the tube. They do make tube covers, but I just put a little blanket over most of the tube once I’m in bed.
Alyssa Silva started the topic Columnists Writes About Earning Her Honorary Harvard Degree in the forum Adults With SMA 22 hours, 9 minutes ago

Ok. So the title of this forum is a joke. I definitely don’t have any sort of Harvard degree. However, my latest column talks about how much knowledge and medical jargon I’ve gained over the years simply by living with SMA and how I, jokingly, should have an honorary degree from Harvard Medical School by now. This idea did come to mind, tho…[Read more]
Jeremy changed their profile picture 1 day, 17 hours ago
Jeremy's profile was updated 1 day, 17 hours ago
Patrick Lenihan changed their profile picture 2 days, 11 hours ago
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Kelly Miller replied to the topic Speech Dictation in the forum SMA Assistive Technology/Equipment 3 days, 12 hours ago

I believe they make a version for Mac, but I’m not 100% sure. The physical version is usually a little more expensive than the downloaded one. I got the downloaded version and had no problem adding it to a different computer when my old one died. They keep track at the company of your purchase, and you can even go online to see the date. I had a…[Read more]
worthywomanLisa replied to the topic Finding Caregivers in the forum Adults With SMA 3 days, 16 hours ago

I find care.com to be an exercise in both misery and futility, but I know of so many users who have exactly the opposite experience.

For me, the online discussions at NMD United seem much more productive. They used to have monthly seminars on different topics like caregiver management…
Alyssa Silva replied to the topic Let’s get to know each other! in the forum Adults With SMA 3 days, 17 hours ago

You’re so right about not judging others. SMA has definitely made me more mindful of that as well. Such a great lesson!
Alyssa Silva replied to the topic Let’s get to know each other! in the forum Adults With SMA 3 days, 17 hours ago

Happy almost birthday Holly!!
Alyssa Silva replied to the topic Speech Dictation in the forum SMA Assistive Technology/Equipment 3 days, 18 hours ago

Good to know. I wonder how compatible it is with Macs.
Mike Volkman became a registered member 3 days, 23 hours ago
rocco replied to the topic Motivation Monday: College and SMA in the forum Going To College When You Have SMA 3 days, 23 hours ago

While I generally like education, I have several bad college memories. Almost entirely due to spending all of my time working or studying. I often had to use help of <span data-sheets-value=”{"1":2,"2":"https://www.topwritersreview.com/top-10-essay-writing-services/"}” data-sheets-userformat=”{"2":268416,"10":2,"14":,"15":"Arial","21":1}”…[Read more]
Tracy Odell replied to the topic Finding Caregivers in the forum Adults With SMA 4 days, 1 hour ago

In Ontario, people who hire their own attendants have a government grant to do so. Those who wish can share their emails with the group, so we can email one another when we are looking for people. This works out quite well because our attendants are working part-time so often a spot that one person needs to be filled is a vacancy in another p…[Read more]
Brianna Albers started the topic Finding Caregivers in the forum Adults With SMA 4 days, 2 hours ago

How are y’all finding caregivers these days? I tried Care.com but no one responded to my ad, and I’m not eager to pay for a subscription, since I haven’t had the best of luck with it in the past.

Do you find caregivers through a company? How do you deal with quality when the hiring process is more or less out of your hands?
Angela J. changed their profile picture 4 days, 12 hours ago
Angela J. replied to the topic Let’s get to know each other! in the forum Adults With SMA 4 days, 15 hours ago

Hi everyone! My name is Angela. Nice to meet you all! 🙂

1. I’m from Michigan, U.S.

2. I’m 18 years old and I have SMA Type II.

3. I like that being disabled has taught me that you shouldn’t judge a person based on their visible strength or abilities. Sometimes disabilities can be very apparent and visible, and other times they are not so visib…[Read more]
Angela J.'s profile was updated 4 days, 15 hours ago
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