Shundra Wooten on her short film “Keep It Moving”

Shundra Wooten was diagnosed with Spinocerebellar Ataxia 3, and made a short film “Keep It Moving” to created awareness about rare diseases.

The reason I wanted to make this short film was to get the audience to see that no matter what the limitations are to still keep it moving if you can.  You see, after showing symptoms at 43, I was diagnosed at age 46 and unlike most of these rare conditions my condition is visible.  Having a genetic diagnosis of SCA3 – Spinocerebellar Ataxia 3 – affects my gait, balance, ability to walk, coordination, and will worsen as the days go by. 

I’m 54 years of age and used to be scared of technology but being in this workshop taught me almost everything but I would say the easiest thing I learned was to hold the camera in the horizontal position.  I plan to participate in the RTS workshop again on February 14, 2024.  I hope to get better coverage and help from some of my younger family members.

I sent the film to the people who were on the credits; their reactions were to keep shining.

Then I sent it to everyone in my family because they have been supportive throughout the whole process

Then I shared it with friends, but they had no reactions. I think they’re just shocked because they don’t know about rare diseases and they have never seen me like this before.

What I would tell first time filmmakers is to share your story and be creative!

I love that Shundra’s approach to this video embraced the idea of “show don’t tell”. There is very little reliance on the standard device of a sit down interview, instead what might normally be considered b-roll becomes the spine of her story. She offers a glimpse into her daily life and we experience with her a piece of her lived experience.

– Daniel DeFabio, Director of Community Engagement for Global Genes & Co-Founder of DISORDER: The Rare Disease Film Festival and The Disorder Channel