A film about rare disease and the heroes going to the ends of the earth to create hope where none existed. Follow the bold adventures of a father climbing mountains for his dying boys, a woman running marathons blindfold in honor of her sister, and a father biking solo across the country and back to raise awareness for the disease that stole his 1 year old son.
Private Debut: 10/2/18 at Global Genes Patient Advocacy Summit, Irvine, CA
Private Screening: 11/2/19 – Charlotte, NC
Private Screening: 3/15/19 – Chan Zuckerberg Initiative – Santa Cruz, CA
Public Screening: 3/31/19 – Naples, FL
Private Screening: 5/3/19 – Global Genes @ OC Marathon – Orange County, CA
5/16/19 – Ally Financial Disabilities Awareness Day – Charlotte, NC
9/12/19 – Biotech Week Boston / Disorder Film Festival – Cambridge, MA
11/9/19 – Disorder Film Festival – San Francisco, CA
11/12/19 – Fargo Historic Downtown Theatre – Fargo, ND
2/27/20 – Rare Disease Week – Nemours / AI DuPont Children’s Hospital – Wilmington, DE
Both At the Edge of Hope and our first film, The Weight of a Mountain, are available to watch for free on Amazon Prime Video.
To learn more about hosting a screening, explore our host a screening page.
“No matter how bad you feel, no matter how low you are, you still have to fight. You’ve gotta pick yourself up and you gotta fight.”
– Carl Kapes, father of two boys with Sanfilippo syndrome, Ryan (14) + Braden (11).
Life expectancy for children with Sanfilippo is < 18 years.
Behind the Scenes
Low-Oxygen Diet
On the Stair Master, training my breathing in preparation for high altitude mountain climbing.
St. Mary’s Glacier
Me (Dan), our actress Rebecca, and our production assistant, scouting the intro scene location at a remote lake in Colorado. It was a glacial lake… so the water was frigid. We filmed the dive a total of three times, twice underwater and once from above with the drone.
Gonna Need a Bigger Boat
Our gear for filming the intro. We wound up bringing almost none of this gear to the glacier after realizing it was a strenuous 40 minute hike each way across loose rock from the nearest road.
Cloaked in Purple
I chose purple as a subtle nod to the purple ribbon used in the Sanfilippo community.
Flying with a Kayak
Filming the intro required a peculiar set of gear, including an inflatable kayak, a collapsable paddle (I had to fly with it), an underwater camera housing, a wetsuit, and a leaf blower, which we used for the scene with the shawl.
Tattoo
The foot tattoo, which served as a recurring theme throughout the film.
The Original
The actual tattoo on my friend Jamie’s foot that inspired the one featured in the film. She got this tattoo to help her endure a tough life challenge, and her story stuck with me.
Ash Wednesday
Residue from communion ash, which we used to capture the “ashes in the wind” visualization of the intro voiceover.
Altitude Sickness
We filmed a number of interviews in Washington DC and flew overnight to Denver, then drive to Breckenridge, Colorado to film Robb. Our producer Paul suffered from altitude sickness.
No 2nd Takes
We wanted the epic backdrop of the Rocky Mountains as the setting for our interview with Robb, which worked well until it began raining on our set towards the end of our interview. I rushed in a few final questions as Paul scrambled on our set to cover up any exposed electronics with clothes from our suitcase.
The Ultimate Gimbal
Our setup for filming some of the biking scenes on an epic, winding road of Breckenridge, Colorado.
Moose on the Loose
After our interview with Robb, we got lunch downtown and encountered this wild moose, munching on bushes in front of the restaurant.
Pancakes.
Brain food.
Droney Goodness
Capturing drone footage during our acclimatization climb in Mexico.
Camera Hard Wear
It was tricky to find a way to make the camera system accessible with gloves but also secure. This was the custom rig I came up with.
La Malinche
The summit of our acclimatization hike of La Malinche at about 14,500′, two days before Orizaba.
Our first film, The Weight of a Mountain, is publicly available (and free!) on Amazon Prime Video:
