@alyssa-silva
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Alyssa Silva started the topic A Mother’s Perspective of Her Baby’s Diagnosis in the forum SMA Parents and Caregivers 11 hours, 12 minutes ago
Today for 31 Days of SMA, we‘re sharing Logan Nantz’s story about her baby’s, Hayden, diagnosis.
Logan’s honesty and poignancy here is a message every newly diagnosed parent should read. Of course, I haven’t been in her shoes. But reading her words and reflecting on the stories my parents have shared about my diagnosis feel eerily similar.…[Read more]
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Alyssa Silva replied to the topic Anyone on risdiplam through EAP? in the forum Roche and Genentech-risdiplam 1 day, 14 hours ago
How exciting Kip! Looking forward to hearing about your progress.
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Alyssa Silva started the topic Becoming a Certified Dog Trainer in the forum Adults With SMA 1 day, 14 hours ago
Today’s 31 Days of SMA post made me tear up a bit, not going to lie.
Sarah Rodriguez shared her experiences with her dog and how she was introduced to unconditional love by her first beloved pup. And, I really resonated with what she said. Dogs— or animals in general— are truly a gift in so many ways and to the point where I almost feel…[Read more]
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Alyssa Silva replied to the topic Traveling Internationally in the forum Adults With SMA 1 day, 15 hours ago
Wow I’m surprised that you’re saying this. Everyone in Portugal gawked at me to the point where I was mildly annoyed. Good to know you had different experiences in other countries!
My father’s family is from Sao Miguel as well, but I’ve never been to the Azores. My mother is from the central Portugal area, so we would stay there and then head to…[Read more]
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Alyssa Silva's profile was updated 2 days, 13 hours ago
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Alyssa Silva posted a new activity comment 2 days, 13 hours ago
Hi Barry. Welcome to the forums! I’m Alyssa, one of the moderators living with SMA type I. Just wanted to say hello and formally welcome you here. Hopefully, these forums will help you connect with others and gain more insight into life with this disease. If you have any questions about the forums, please feel free to reach out to me, Kevin, or D…[Read more]
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Alyssa Silva started the topic Are you contributing to SMA Awareness Month? in the forum Raising Awareness of SMA 2 days, 13 hours ago
Hey all. Was curious if there’s any fun or creative ways you’re participating in SMA Awareness Month.
For example, here at SMA News Today, we’re doing 31 Days of SMA. Are you using your social media platform to educate others? Blogging? Live streaming or YouTubing?
I plan on posting to Instagram, I just haven’t collected all my thought…[Read more]
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Alyssa Silva replied to the topic Columnist Writes About Rest and Productivity in the forum Adults With SMA 2 days, 14 hours ago
This column really resonated with me. Whew.
By nature, I’m a workaholic. I love being productive. But I often feel trapped in a body that doesn’t allow me to work at the pace I want. It stresses me out. I become frustrated with myself. Eventually, I come to terms with it. Then I finally take some time to rest.
It’s a vicious circle for sure,…[Read more]
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Alyssa Silva started the topic Traveling Internationally in the forum Adults With SMA 2 days, 18 hours ago
Ever traveled overseas before?
As many of us know, traveling when you’re in a wheelchair can be equally rewarding as it is frustrating. I’ve been there many a time, but I would do it all over again for the experience.
Zoe Watson shared her experiences with us for 31 days of SMA. She currently resides in Australia and has traveled to many cou…[Read more]
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Alyssa Silva posted a new activity comment 3 days, 15 hours ago
Oh thanks so much for following me! I have SMA type I.
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Alyssa Silva posted a new activity comment 4 days, 12 hours ago
Hi Kate! Welcome to the forums! I’m Alyssa, one of the moderators living with SMA type I. Just wanted to say hello and formally welcome you here. I see you started risdiplam a few days ago— AMAZING. You’ll have to share your experiences with us when you can. Hopefully, these forums will help you connect with others and gain more insight into life…[Read more]
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Alyssa Silva posted a new activity comment 4 days, 12 hours ago
Hi Katie! Welcome to the forums! I’m Alyssa, one of the moderators here living with SMA type I. Just wanted to say hello and formally welcome you here. I see you have a daughter that was diagnosed around 5 months of age. That’s when I was diagnosed as well. Hopefully, these forums will help you connect with others and gain more insight into lif…[Read more]
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Thanks, Alyssa! I’ve been following you on Instagram for a while now, and enjoy seeing what you’re up to. 🙂 Are you type 1 or 2?
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Oh thanks so much for following me! I have SMA type I.
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Alyssa Silva posted a new activity comment 4 days, 12 hours ago
Hi Lorna! Welcome to the forums! I’m Alyssa, one of the moderators here living with SMA type I. Just wanted to say hello and formally welcome you here. Hopefully, these forums will help you connect with others and gain more insight into life with this disease. If you have any questions about the forums, please feel free to reach out to me, K…[Read more]
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Alyssa Silva started the topic Going to College: 31 Days of SMA in the forum Going To College When You Have SMA 4 days, 12 hours ago
Hey all, if you saw Kevin’s post earlier, we’re doing a 31 Days of SMA initiative for SMA Awareness Month and featuring people in our community.
Today’s story is all about college life for Dan McHale. I definitely resonated with his experiences very much so during my college career. The person I was when I entered campus was someone vastl…[Read more]
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Alyssa Silva posted a new activity comment 6 days, 12 hours ago
Hi David! Welcome to the forums! I’m Alyssa, one of the moderators here living with SMA type I. Just wanted to say hello and formally welcome you here. Hopefully, these forums will help you connect with others and gain more insight into life with this disease. If you have any questions about the forums, please feel free to reach out to me, K…[Read more]
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Alyssa Silva posted a new activity comment 6 days, 12 hours ago
Hi there! Welcome to the forums! I’m Alyssa, one of the moderators here living with SMA type I. Just wanted to say hello and formally welcome you here. If you have any questions about the forums, please feel free to reach out to me, Kevin, or DeAnn. You can also introduce yourself in the welcome forum here. Thanks for joining us!
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Alyssa Silva posted a new activity comment 6 days, 12 hours ago
Hiiii Jenn 🙂
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Alyssa Silva replied to the topic Working From Home… Forever?? in the forum Adults With SMA 6 days, 12 hours ago
I’ve always worked from home as well. I definitely think this is a huge step in the right direction for employment opportunities in the disability community. It’s just a little discouraging that it took a pandemic to show that working from home is a viable and accessible option for us.
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Alyssa Silva replied to the topic Going Out In Public for the First Time in the forum Adults With SMA 1 week ago
Yeah I agree with what Dennis said. For example, I had to go to an appointment at the hospital last week. Of course, I was a little nervous. But I did everything I possibly could to protect myself that if I got the virus, it would be completely out of my control at that point, ya know?
I wore a mask, used my blue light glasses to shield my eyes,…[Read more]
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Alyssa Silva started the topic Disability and The NY Times in the forum Disability in Media 1 week, 1 day ago
Hey! Just wanted to drop in to share this link I found to be awesome.
It’s The NY Times asking its readers to submit questions or what they’d like to see on their platform regarding disability and accessibility. I’ve noticed more conversations taking place online since the 30th anniversary of the Americans with Disabilities Act which is very…[Read more]
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