JOINING THE FIGHT AGAINST ALS!
"...funny, earnest, sweet, and heart-wrenching…”
— VIDEO LIBRARIAN
A DOCUMENTARY ABOUT LIFE, LOVE AND A TICKING CLOCK
LOVING JOHN profiles John Godinet, an irrepressible Pacific Islander and ultra-runner, and his husband Peter in rural Maryland. Together, they are wrestling with John's diagnosis of ALS (Lou Gehrig's Disease.
ALS is a cruel disease. Day by day, it robs people of everything - movement, speech and eventually breath. It gradually deprives John of all the ways in which everyday life grants him pleasure and meaning. And for Peter, caring for John around the clock is physically and emotionally exhausting.
"I have never leaned on people before; I've never asked for help"
— JOHN GODINET
There is no cure. Life expectancy is roughly 3 to 5 years, sometimes less. Research shows progress: since 1993, some 40 genes have been identified as possible contributors. But advancements have yet to improve people's lives.
ALS is tremendously expensive. Medical bills can run more than $200,000 a year. Out-of-pocket expenses mount up as well: for power wheelchairs, door widening; ramp construction, and more.
"I can't be there 24|7, 365. I can't do it!"
— PETER, JOHN’S HUSBAND
And then, there are the hidden costs of caregiving. It's often family members who must step forward — unpaid and unable to pursue employment opportunities of their own. And the cost isn't just financial; it's physical, emotional, psychological.
The toll is greatest on families living on the margins. People with lower incomes and with poor or no health insurance are diagnosed later than others. Black patients wait an average of 8 months longer for a diagnosis than white patients. Late diagnosis makes patients less likely to qualify for clinical trials.
In LOVING JOHN, the struggle against ALS is palpably real — and multidimensional. John is a veteran from American Samoa who survived sexual trauma only to now face rapidly increasing disability. Peter strains under the burden of full-time caregiving; together, as an aging gay couple they find themselves at odds over the reality of an end-of-life decision.
“...magnificent representation of topics... that seldom get screen time.”
— VIDEO LIBRARIAN
Join Us
The producers of LOVING JOHN are forming partnerships with many in the ALS-affected community to create public awareness and highlight the need for funding - both in the pursuit of a cure as well as to meet the pressing needs of patients and families battling this disease.
Here are a few ways the film is being used to build awareness and drive community action:
PBS broadcasts nationwide highlighting ALS & Caregiving months
Unlimited access on college & university campuses
In-person screenings + community dialogue events
Virtual screenings + online panel discussions
Creation of custom educational tools for activist
