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The ‘SMA News Today’ Forums: Discussions About Spinraza, Research and Development

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In addition to providing a space for SMA patients, parents and caregivers to talk about their daily lives and ask each other questions, the SMA News Today forums are also designed so that the SMA community can discuss the latest news regarding research and treatments. Specifically, the research and development group and the Spinraza forum are ideal outlets for sharing this kind of information.

The following are several discussions that have already started in these groups and forums. Simply follow the provided links here, and join these conversations.

From the Research and Development Group: AveXis Reassures SMA Community that Therapy is Safe and “Transformative”
Following a recent animal study that found some levels of toxicity when subjects were exposed to high doses of AVSX-101, representatives from AveXis wanted to assure the SMA community that this study is nothing to be alarmed by. Company CSO Brian Kaspar noted that some of their patients have been receiving the treatment for four years, and have had no major medical issues with the drug. Join the discussion here.

MORE: Join these discussions in the SMA News Today forums

From the Spinraza Forum: Introduction
DeAnn Runge, who recently joined the SMA News Today team, is now the moderator of the Spinraza forum. In this post, she introduces herself and shares a bit about her experiences receiving Spinraza. This is a great space to share tips and experiences related to the treatment, as well as ask questions.

From the Spinraza Forum: My Spinraza Journey
Also in the Spinraza forum, this discussion about Ryan Berhar’s column details his struggle to acquire this treatment. Berhar’s article chronicles his battles with his insurance provider, as well as being denied the treatment due to medical risks. For those who are seeking Spinraza or have questions about the drug, this is a great place to continue the conversation.

MORE: Using groups in the SMA News Today forums

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 another 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.

Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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Kevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.

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