Film Release + Life + Health Updates
Wow, it has been a while... Here are some things that have happened since I last posted.
My husband Cort and I officially released our documentary Behind the Visible, about living with POTS, in early August 2021! We had a few screenings over the summer including a couple of private family/friend viewings in both the Chicago area and Missouri as well as a global virtual premiere night in late May 2021. We are so grateful to all who supported, sponsored, and attended our premieres and have been overwhelmed by the feedback so far. POTS can be such a frustrating, long, and lonely journey and to know we have helped so many feel validated, seen, and represented through our film truly warms our hearts. To see what some are saying, you can check out our reviews on IMDb. And if you haven't seen our film yet, you can rent or purchase it through Vimeo! The link below will take you to the film directly.
Rent/Purchase Behind the Visible
Our film also screened during Dysautonomia International's 9th Annual Conference and my husband and we were deeply touched to learn that we had been named this year's Amelia Moore Sparkle Award recipients for compassionate advocacy.
Amelia Moore was an incredible advocate for dysautonomia and played an instrumental role in the formation of Dysautonomia International. Quick to volunteer and help in any way she could, her compassionate advocacy and heart for others made a huge impact in this community and inspired those around her. Sadly, she passed away from an extremely rare neuromuscular disease in March of 2016. With Amelia’s family’s support, Dysautonomia International created The Amelia Moore Sparkle Award for Compassionate Advocacy to honor her legacy.
Cort and I are truly humbled and honored to be associated with Amelia.
What's next for the film?
Well, we are still hoping to reach as many people with POTS, dysautonomia, and invisible illness as possible so if you know anyone who you think might resonate with or benefit from our film, feel free to pass it along.
This is a long shot, but if you know anyone connected to a film agent or any major platforms who might be able to connect our film with a distributor, please don't hesitate to reach out. ;)
Next month (October 22-31, 2021), Behind the Visible will be part of the Bochumer POTS Symposium in Germany!
To keep up with the latest on Behind the Visible, you can follow us on social media or sign up for our email list via our website at www.behindthevisiblefilm.com
Non-film related updates:
I started a chronic illness support group called Chronically Courageous with two wonderful women at my local church in early 2021
I've been working on a book and building a remote business for myself (more on that later)
I continue to moderate the Dysautonomia International - Missouri Support Group and coordinate/lead the virtual meet-ups each month - if you live in MO and have some form of dysautonomia, you're welcome to join! I've linked the FB group here
I was able to spend full two weeks up in Michigan at my grandma's cottage this August, making art, seeing friends and family who also visit there, hanging at the beach, and just relaxing at the cottage
I continue to contend the symptoms of POTS, chronic migraine, daily persistent headache, etc. but have been able to manage so much better now that I work for myself and work flexibly from home. Very thankful for the opportunity to do this!
I am in the process of pursuing a potential CSF Leak, or spinal fluid leak, (which could be possibly causing my constant headache and head pressure). I recently sent in a bunch of paperwork & scans to a new doctor to take a look to see if I should make an appointment to see him at Cedars Sinai in LA - extremely grateful that he is doing this review free of charge!