“There’s two types of war. There’s war where…people shoot other people…And then there’s the type of war where you don’t really see who you’re fighting against. It’s just… a really…bureaucratic, invisible, system.
And people find it harder to understand that second type of war. Cause it’s not as easy to see.”
I also have a condition called SMA, [Spinal Muscular Atrophy] that causes me to have weak muscles – I explain SMA in my video here. It’s a genetic condition that causes severe muscle weakness to the point where I am dependent on others and my wheelchair for physical movement.
I have never defined myself by my disability. But I can’t deny that for the 24 years I’ve been alive, it’s shaped all my experiences. Some of those experiences being very different from those other people have had.
The feature film we’re making will capture my life as it is now, the journey of trying to access a life-changing treatment for my disability and the results of what happens.
The first part of the film [the part we're crowdfunding for now] will focus on my life before Spinraza with the knowledge that there is a treatment out there. It’ll capture the highs and lows of life, living in a world that just isn’t made for me or for people with disabilities.
Most importantly, the documentary won’t be a medical story – it’s a human story with reflection on how society works. There are many films that represent children with disabilities but few that offer real insight into the struggles of living with a disability as an adult.
This is a truly never-before-told story of determination, hope, breakthrough medical technology and a gaze at the stars.
Kiana Kalantar-Hormozi - [Co-producer/Co-director/Editor] I’m 24, a filmmaker and a star-gazing enthusiast. I’ve experienced a range of work, including music and theatre performance, and working at the IBC for the Glasgow Commonwealth Games 2014. I recently made a hip-hop protest film with media co-op, called Tax on Me. My short documentary Poly Amour has also been to festivals including the SQIFF shorts 2017. My dream is to live on a boat and establish a production company of my own, making awesome films and travelling round the world. I love jazz! Check out my work at my website - coming soon - and my #Spinraza4all campaign!
Irenej Vid Bosnjak - [Co-Producer, Post-Production Sound, Music] I am 27 years old filmmaker and musician from Slovenia. I’ve worked on short and feature films in various positions (DoP, writer, editor, sound recordist, sound effects editor, 2nd AD, PA, runner and composer). I also have experience in TV production, as an on location camera operator for a TV show, video switcher for reality show and as director on promo videos. Right now, I'm in the final stages of post-production for my fiction feature film “How to Be a Writer”, where I work as writer/producer/director [Kiana is also Associate Producer!]. I have a production company Art Party Kranj - our international brand is IRE Studios
More about me and my projects on my website and imdb .
Adam Sinclair - [Co-director, DoP, Sound] I'm 25, freelance Videographer, Content Creator and in the constant pursuit of making cooler and cooler sh*t. I am still learning and I like to learn by doing. Promotional videos for charities and small business pay the bills. I get my thrills from making music videos, documentaries, and the occasional short film/animation.
When I’m not being paid to work you’ll either find me playing Dungeons and Dragons, cooking up a storm, or climbing a mountain. Since those activities are pretty easy on my piggy bank and I’m saving up for a new swimsuit for my beach bod. Here is my trendy website
What We Need & What You Get
Your contributions will go towards the cost of production and post-production of Part 1 of the film. We have top-notch kit and industry standard software to make the project happen, so we’re not hiring any kit which will save a lot of money. The money will go towards:
1. Time spent on the project that’s not flexible – even filmmakers have to pay rent. Time is money. And being a starving filmmaker is no longer in fashion. We’re also spending a lot of pro bono time on the project so this is the minimum possible to make it happen.
2. Travel costs – I’ll be going out and about, living my daily life. For someone to follow me around with a camera it’s gonna cost.
3. Catering costs - Armies don't march on empty stomachs. We'll cut the caviar.
4. Consumables - Batteries, hard drives and paper and ink for all those lovely call sheets!
4. Insurance – yip, we’re health and safety savvy and it’s an important part of making sure everyone is safe. It’s also vital to getting access to public places like hospitals.
5. Platform fee – the total takes into account the money we’ll need to pay for using Crowdfunder!
I won’t be funding any of my time spent on the project. I think that clashes with the fact that I’m also a contributor – so I will not be financially benefitting at all.
Ways to help
We would ask that if you can’t afford a lot, contribute £1 to show your support of the project.
But if you can’t contribute financially, there’s a lot you can do to support this film and the campaign to access Spinraza using the hashtag #Spinraza4all.
Share this page with your friends and family and post on your social media sites. Tweet a few of your favorite celebrities and ask them to back our project!
Finally, keep up-to-date with news and petitions for Spinraza. Get involved to make sure people who need life-saving and life-changing treatment get access to this no matter where they live and what age they are. This is the UK petition .
If you want to read more about my reaction to the drug or get insight into why it’s important, you can find this on my blog.