December 20, 2017 at 12:56 pm #10926
Welcome to the adults with SMA forum. I’m Kevin Schaefer, and I have SMA type II. You can read my weekly column “Embracing My Inner Alien” here on the SMA site, and listen to the SMA News Today podcast.
To start the discussion here, I’d like you all to provide just a brief introduction of yourselves and why you’re here. What do you hope to gain from this forum and what are some topics you’d like to discuss here? Keep in mind that this forum is public. For a more privatized discussion please join the SMA patients group.
This forum is for all SMA adults. Some of us are working professionals, while others are either in school or possibly looking for work. Regardless of where you are in life, this is a place for you to share tips and experiences, ask questions and simply connect with other SMA adults.
Thanks for joining us!
January 17, 2018 at 10:10 am #11135Federica BorsiParticipant
I’m Federica, I’m 22, type3. I’m italian.
I joined this forum because I would like to discuss with you, to exchange information about drugs, gene therapy, daily life, medical assistance and treatments.
I apologize for my bad english.
January 17, 2018 at 10:15 am #11137
Hi Federica, thanks for joining us!
Yes here at SMA News Today we regularly cover information about drug therapies and daily life. We have a forum here specifically about Spinraza. I’m also very interested in discussing daily life with various SMA patients.
Also, if you have a specific question in mind or a topic you’d like to discuss, feel free to create posts here anytime. We value every user’s input.
January 22, 2018 at 1:40 pm #11150Monika LemeshonokParticipant
My name is Monika, I am from Belarus, have SMA 2 type, I am 32 years old. I am artist, all my life I like painting, art it is my life. I have art exhibitions in differents european country. I am believe in miracle and I want find good treatment.
Thanks for this forum!
January 22, 2018 at 1:42 pm #11152
Thanks for joining us Monika! Is any of your artwork available online? I’d love to check it out.
Yes I do hope that you’re able to receive a treatment as well. Have you looked into Spinraza?
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