‘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.

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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 [email protected].

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