TESS IS NOT ALONE - A USP7 Story - review by Jennifer Sills
I watched Tess is Not Alone on The Disorder Channel. If there were a rare disease 101 list of movies to watch as you begin your journey, this would be at the top of my list. This is a must-watch for anyone new to the rare disease space. Bo Bigelow has many talents: podcaster, filmmaker, dad-extraordinaire to Tess, attorney, rare champion, to name a few. His film gives some great advice.
"5 things I can't stop thinking of after watching Tess is not Alone about the rare advocacy journey"
Never give up
Be a beacon to find others in your community
Learn from others before you, and don’t reinvent the wheel
There is power in numbers
The profound effect of feeling like you belong
As you enter this new ecosystem with a completely new lexicon (that is, if you weren’t a scientist before you started this journey), Bo’s film reminds us of the basics of rare disease advocacy 101. Watch it today.
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Guest blogger Jennifer Sills’ daughter was the 6th in the world to be diagnosed with Okur-Chung Neurodevelopmental Syndrome (OCNDS). Jennifer is a non-profit founder bringing together OCNDS patients, raising awareness, and driving rare disease research. She is Founder & President CSNK2A1 Foundation