A documentary about a rare recessive gene disorder called Fraser Syndrome by a filmmaker living with it.
Interview with Director Kyle Anne Grendys
Congratulations! Why did you make your film?
My film is about the incredibly rare disorder, Fraser Syndrome that I was born with. At the time of my birth 26 years ago my parents were told I was the 75th person to be diagnosed with this disorder. As you can imagine growing up I felt very alone. I had friends and family that didn't look anything like me and because the internet wasn't what it was today I had no means to find others like me. This film is what my parents needed after my birth and what I needed growing up. I don't want anyone else with Fraser Syndrome to have to feel alone again.
Imagine I’m a member of the audience. Why should I watch this film?
Well, who doesn’t like to see how someone else lives? In a matter of 20 minutes, you will meet seven people with a disorder you most likely never heard of. Some of the most resilient and undoubtedly strong people I’ve ever had the chance of meeting. You will see that we aren’t simply our disorder but so much more. You’ll get to know families that fight for their children even when the world has written them off. You’ll see me, a student that was told the best I could expect from life was a career working at McDonald’s instead now travel all around the world trying to bring awareness to my disorder. I may be a little bias but who wouldn’t want to see all that?
How do personal and universal themes work in your film?
I dare say I will never make a more personal film. This is my life and every moment in it that has made me the person I am today. My disorder doesn’t define me but rather because of how rare my disorder is I am in a very unique position where I get to define my disorder. Fraser Syndrome is what Deanne, Masa, Eloise, Hannah, Noah, and I say it is. That's pretty special. As for universal themes, for us with Fraser’s, we were born underdogs. Even though it takes convincing sometimes, the world loves an underdog.
How have the script and film evolved over the course of their development?
Since it’s a documentary there wasn’t a script but the storyline changed with each person I was lucky enough to interview with. Since this was an assignment to graduate from the University of Wisconsin - Milwaukee film program, I had to keep the film 20 minutes long. I really struggled with that because I really wanted to do everyone's story justice.
What type of feedback have you received so far?
The feedback has been overwhelmingly awesome. I get so many people coming up to me after screenings wanting to tell me all about their family member with a rare or even commonly known disorder. It's so heartwarming to see that our stories in Fraser Syndrome & Me can touch the hearts of anyone.
Has the feedback surprised or challenged your point of view?
Yes actually, someone recently pointed out to me that it was nice to see your two communities. I was confused like Fraser Syndrome only has one community. She was talking about my friends and family that are at the beginning of the film that clearly loves and supports me so much. She was right, I always had a very loving community and I thank them for helping me find my other one.
What are you looking to achieve by having your film more visible on www.wearemovingstories.com?
Awareness, If now when you googled Fraser Syndrome you will find some of the most daunting facts, you’d hear all the worst-case scenarios and you’d have no idea that in London there are three amazing ladies living very normal lives. You wouldn’t see Maša in the Czech Republic who lives on a farm with her partner and their cute dog or Noah in California who reads more than anyone I’ve ever met. We are changing the narrative with each article written about Fraser Syndrome and that’s one of the things I’m most proud of.
Who do you need to come on board (producers, sales agents, buyers, distributors, film festival directors, journalists) to amplify this film’s message?
American Medical Association, I would love new “Fraser Families” to be handed Fraser Syndrome & Me with their child’s diagnosis. It’s so important to know that, yeah it seems scary right now but there is hope.
Film festival directors are also always welcomed. I will travel with this film for as long as I can. I couldn’t dream of a better way to live.
I’m all ‘hearing impaired’ ears, feel free to reach out.
What type of impact and/or reception would you like this film to have?
Anytime someone can walk away from a movie feeling inspired, that’s a win.
What’s a key question that will help spark a debate or begin a conversation about this film?
What’s wrong with your eye? How come your voice sounds like that? Didn’t you hear that?
What is Fraser Syndrome?
All the questions I’ve heard my whole life. This film is what I meant when I said: “I was born this way.”
Would you like to add anything else?
To anyone being welcomed into the Fraser Syndrome Family, congratulations on your baby. If you happened to find this. I know the odds sound scary. I know you’re worried about how your child will grow. I won’t tell you it’s easy. I can’t promise you anything but everyone I have met with Fraser Syndrome has the most amazing heart. We are fighters through and through. Don’t let anyone take hope away from you.
If you have Fraser Syndrome, you have a community. I hope to meet you one day so I can tell you all about it.
What other projects are the key creatives developing or working on now?
I think I can officially say that I'm starting the process of creating a feature-length version of this film. I still have footage I really would love to use. So much of not only everyone else’s story but mine. I wasn’t able to touch on my years being bullied in school or Deanne’s son that was born a few weeks after we met her. To this day the first thing people say at festivals is “I wish it was longer!” ME TOO! So that’s what I’m going to do.
Interview: August 2019
We Are Moving Stories embraces new voices in drama, documentary, animation, TV, web series, music video, women's films, LGBTQIA+, POC, First Nations, scifi, supernatural, horror, world cinema. If you have just made a film - we'd love to hear from you. Or if you know a filmmaker - can you recommend us? More info: Carmela
Fraser Syndrome & Me
A documentary about a rare recessive gene disorder called Fraser Syndrome by a filmmaker living with.
Director: Kyle Anne Grendys
Producer: Charles P. Grendys III
About the writer, director and producer:
My name is KYLE ANNE GRENDYS. I am many things, a little sister, a world traveler, dog mom, musical fanatic, a recent graduate from the University of Wisconsin - Milwaukee’s film program, oh … and I have a disability. I was born with an incredibly rare genetic disorder called Fraser Syndrome. The day I was born doctors told my parents I wouldn’t survive the night. 26 years later I am still proving them wrong. I like to say that I see the world through a view you can’t get from two eyes. I have seen the very worst the world has to offer but without seeing the bad you would never recognize the good. I dedicate my life to making films about everything good.
CHARLES P. GRENDYS III is the owner of Big City Sets: construction coordinator for film, photo, and private events.
Looking for: film festival directors, producers
Facebook: Fraser Syndrome & Me
Hashtags used: #frasersyndrome #Frasersyndromeandme
Funders: Go Fund Me
Where can I watch it next and in the coming month? Oregon Documentary Film Festival - August 11th - 5th Avenue Cinema; Vail Films Festival (Colorado) - August 17 at 12pm - Cinebistro Theater; Salute Your Shorts - August 16th at 7pm & August 18th 11:45am - The Assistance League Theater; ReelAbilities Pittsburgh - September 5 - SouthSide Works Cinema.