‘Life and Atrophy’: A Documentary About a Young Boy’s Journey With Spinraza

 

Documentary filmmaker Gareth Burghes first heard of spinal muscular atrophy (SMA) through his father’s work as a geneticist. He soon became aware of ongoing clinical trials that were studying a breakthrough drug that might change the lives of those who have the disease. As a filmmaker, Burghes knew that he wanted to document this important discovery and as he shares on the Life and Atrophy website, meeting 5-year-old Miles and his family gave him the opportunity to do so.

MORE: Teen with SMA hopes Spinraza will get him back on his feet

Life and Atrophy follows Nikki and Tony McIntosh as they search for a treatment for their son Miles, who has SMA type 2. Miles is placed in a clinical trial for a new drug, Spinraza. Burghes’ documentary represents what can happen when researchers, pharmaceutical companies, and families all come together to seek solutions and shows the science behind getting to the first FDA-approved treatment for SMA.

If you would like to see the full documentary or set up a community screening, please contact Gareth via email at lagomorphfilms@gmail.com.

MORE: Nine commonly asked questions about Spinraza

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.

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