September 30, 2020 at 11:09 am #24932
I can’t believe I hadn’t heard of SMA News Today Forums until a couple months ago. That shows how much I have to learn about the SMA community and I’m excited to learn!
My name is Ari and I have SMA Type I. Although I’ve kind of been a solo man act for most of my life, that doesn’t mean I haven’t done a lot. I’m a college grad from Queen’s University of Charlotte and for the past 20 years I’ve done a ton of advocacy. I advocate for a Medicaid program called Private Duty Nursing, PDN. This program sends skilled nursing, RNs and LPNs, into people’s homes. Without this program, I and many others couldn’t survive.
To advocate for PDN and other programs I’ve met with countless state legislators, been to Washington DC twice, and even been involved in a couple of court cases. Although I haven’t officially been part of any advocacy group in the past, I sometimes work closely with the Government Liason Officer of the home care agency I use.
All that being said, I regret that I haven’t been more involved in actual SMA causes. That’s why I’m so excited to be joining this group! I’m absolutely willing to learn from all of you and be whatever support I can.
For fun I like science fiction and comic books, preferably both, LOL. I also like to read and write a lot. That’s just the tip of the iceberg though and I’m looking forward to getting to know all of you as well.
Hope you’re having a great day!
September 30, 2020 at 11:41 am #24933DeAnn RKeymaster
Hey Ari! Welcome to the community. Sounds like you’ll fit right in. We have other sci fi and comic enthusiasts here as well. Do you have a favorite?
Great program to advocate for. Programs like those are so important to many of us and we need our voices heard. It can be difficult though, so it’s great you’ve been able to do it. Keep it up and if you have advice for us on advocating successfully please share anytime!
October 1, 2020 at 11:38 am #24941Alyssa SilvaKeymaster
Ari! Thank you for taking the time to introduce yourself. It’s always nice getting to know new members. Welcome 🙂
I have SMA type I as well and lead a pretty active life at almost 30 years old. It’s refreshing to hear other people’s stories who have defied the odds and lead pretty normal lives. Your advocacy work is truly encouraging and much appreciated. As someone who gets PDN and sees the great need for it firsthand, I am grateful for people like you who continue to fight for such important programs.
Please don’t be a stranger around here!
October 1, 2020 at 11:45 am #24942
Nice to meet you online and thanks for your encouragement on advocacy!
As far as Sci fi and comics, I jump around a lot, but right now I really like reading the old Alita: Battle Angel manga books from the 90s.
What do you like to do?
October 1, 2020 at 1:32 pm #24944Kevin SchaeferKeymaster
Hey Ari! Glad you found us.
Yeah, I’m a big sci-fi and comics guru as well. Any favorite movies/books/comics?
Looking forward to getting to know you here! Please let us know if you have any questions.
October 3, 2020 at 10:05 am #24957
I definitely won’t be a stranger around here. Chatting with people gets my mind off things, LOL.
I think we crossed paths before online before, a few years ago when I was writing an article. It’s nice to meet you again!
So you have PDN too? How have the quality of the nurses been for you? Can I ask you a couple questions about that topic later?
Hope you’re having a good day!
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