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 – TICKETS HERE
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
More screenings TBA here
We are considering a US and UK release on Amazon Prime Video sometime in 2020. In the meantime, check out our first film, The Weight of a Mountain, at www.theweightofamountain.com or 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.
Father of Ryan + Brayden