Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”
My name is Patrick. I grew up in New England and now live the Pacific Northwest with my s/o and our 4 year old black lab. I was diagnosed with SMA in 1966. I am an alumnus of the University of Rhode Island.
Nice to meet you Patrick! I’m 25 with Type 2. I graduated from North Carolina State University in 2016 with a B.A. in English.
After graduating, I spent some time freelance writing for some nonprofit organizations and websites, and eventually I came across this site SMA News Today. I started writing my weekly column “Embracing My Inner Alien” in April 2017. A few months later I was hired to work full-time for the site’s parent company BioNews Services.
My role as the SMA News Today Community Editor consists of managing this forum and helping other forum moderators on other BioNews sites, producing podcasts, writing my columns, and engaging regularly with the SMA community. I love it. I’m able to work from home, and still be able to do other projects. I do creative writing as well, and I’ve published a short comic in an anthology, and I’m working on other scripts and stories as well.
I live at home with my parents, and I have caregivers come to my house throughout the week. I also have a friend drive me to my weekly physical therapy sessions, and I’ve been on Spinraza since November 2017. Feel free to ask me any questions!
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.