Not Fade Away: Final Production 

For over half a decade, I have had the great pleasure and opportunity to embed with Rebecca Alexander and the Usher Syndrome Society in pursuit of creating a feature documentary film. We have filmed across several states, with many people – there have been laughs, tears and everything in between, and the result thus far has been a profound, loving story about friendship, courage, grief and hope: NOT FADE AWAY tells this story of Rebecca – psychotherapist, author, and athlete living with Usher syndrome, a rare genetic condition that causes progressive hearing and vision loss. The film follows her as she navigates an uncertain future, collaborating and forming deep connections within the deafblind community through the advocacy work of the Usher Syndrome Society, the advancements of groundbreaking scientific research that could change lives, and the journey of Rebecca’s memoir being into a Hollywood feature film. 

As part of our final phase of production for the documentary that will be completed next year, we will be capturing this awesome event organized by the Usher Syndrome Society – where Rebecca and 10 others with Usher syndrome will swim from Alcatraz to shore. Rebecca exists in a gray space of “neither here nor there.” This swim will be symbolic of that space, both in terms of her journey and also being neither fully sighted/hearing, nor fully blind/deaf. Such is the nature of having a progressive disability like USH. 

This page is a dedicated vehicle to crowdfund for our project – specifically for this final production on October 17th, where we will cinematically + emotionally capture this amazing feat of athleticism, resolve and faith that Rebecca and others will undertake. We’d be so grateful for you to consider helping us execute that vision, and we appreciate your willingness to consider becoming a part of our team through supporting this final production shoot. 

Please know that your contribution will make a large impact on us being able to achieve our goals. We know that this film, and executing this final shoot, will help our mission to deepen understanding and empathy, and create advocates for Usher syndrome and become invited in developing treatment options. We are partnered with the Ush Society, sharing everything from footage to aligned goals in impact. Further, your contribution is 100% tax deductible.