The Promise of Gene Therapy

Filmmaker Q&A with Director Dan Hayes

Please provide a brief description of the work or organization featured in your video:

Lysogene is a pioneer in the basic research and clinical development of gene therapy for neurodegenerative disorders .Their mission is to radically improve the health of patients suffering from incurable life threatening conditions. They do this by developing AAV vectors that have demonstrated their effectiveness in safely delivering genetic material to the central nervous system.


What motivated you to make this film?

My motivation to make this video was mostly because I found Karen’s devotion to her daughter to be incredible and worth sharing. Being a new dad myself, I was particularly moved by her efforts to find a cure for her daughter.


What do you want audiences to take away from your film?

I won’t answer this question. 🙂 For audience to decide.


Please list key points that should be covered in a post-screening discussion:

What’s the point of this video?
What did you learn?
Did it make you think about the topic in a new way? How?


Please provide information on any recent developments regarding the issue or subjects of the film. How have things changed or not changed?

Lysogene – Karen is working on more clinical trials – the next phase of which is critical for helping the product and procedure to be released on the market for a much bigger consumer base.


What opportunities are available for those interested in getting further involved?

For more stories like Karen Aiach of Lysogene, subscribe at To learn more about the work Lysogene is doing visit


Please provide any additional resources (websites, links to additional videos, forms, articles, etc.):,,


Is there a particular documentary film or filmmaker that had a major influence on your career?

The Maysles Brothers and their pioneering cinema verite work had a profound impact on my approach to filmmaking. The foundation of a good piece starts with respecting your subject for who they are.


Please tell us what camera(s) you shot with primarily – and any other special equipment that you used and why you used it.

We use the Sony PXW-FS7 and do a lot of pre-production for our stories.


Please share a personal story about your experience making this film.

We were in Paris for this shoot and had to navigate Paris traffic during the huge world conference on Climate Change – needless to say we weren’t on time for all our shoots.


Please tell us about any special styles or techniques that you used during the production of your film to help tell your story. 

We use extensive pre-interviews and put together a Script and Storyboard before we arrive to help our production team understand the vision for a piece. This allows us to help our subjects speak in an authentic voice but also helps us focus before we start editing.


How did your story evolve from day one, to the very last day in post? Is your story what you thought it would be?

Pretty close! We were happy to get an interview with Michel Zerah, who performed the surgery for Ornella and we weren’t sure we were going to be able to get it. We think it added to the final product.


Please describe the most rewarding experience you had while making this film.

Getting to spend time in Karen’s home and meeting Ornella was great. It takes so much effort to care for someone in Ornella’s condition so meeting Karen and her caretakers was enlightening.


What advice can you give to other impact filmmakers?

Give yourself a deadline and make stuff! When I started, I did a lot of slide shows with music, short wedding videos and entered contests. All these things helped me build my skills.


What’s your favorite part about the filmmaking process and why?

Interacting with the people we are profiling. Everyone has an interesting story and being a filmmaker allows me to meet new and interesting people with different passions. Basically it’s a dream job.


What’s the one item you always take with you when working out in the field and why?

I always bring my iPhone which has a meditation app called Headspace on it. Every evening before a shoot, I iron my clothes and lay them out, I print all my questions and release forms and the next morning, I wake up early and meditate to get myself in the right mindset. I feel like this helps me stay calm and present with the people I’m interacting with.


What have you learned about the value and impact of the project?

Human beings have an incredible ability to find new solutions and drive progress. It’s made so crystal clear by the people in these stories. It is a privilege for us to be able to capture that.



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