JOINING THE FIGHT AGAINST ALS!
“Loving John…tackles incredibly harrowing subject matter with grace and levity.”
— VIDEO LIBRARIAN
A DOCUMENTARY ABOUT LIFE, LOVE AND A TICKING CLOCK
Watch the Trailer
John Godinet, an ultra-runner based in Maryland faces ALS (Amyotrophic Lateral Sclerosis). LOVING JOHN a PBS documentary, profiles John, his husband Peter and their friends as they embark on a path of turbulence and uncertainty.
Day by day, ALS robs people of everything – movement, speech, and eventually breath. It gradually deprives John of many ways in which everyday life grants him pleasure and meaning. And for Peter, caring for John around the clock is physically and emotionally exhausting.
A Cruel Disease
"It’s scary; with ALS, you gradually lose everything."
— JOHN GODINET
Life expectancy is roughly 3 to 5 years – though as little as one year, and for a fortunate few, ten or more. Research shows progress: since 1993, some 40 genes have been identified as possible contributors. But this advancement has yet to affect people’s lives.
The Cost
ALS is tremendously expensive. Medical bills can run more than $200,000 a year. And, as ALS takes hold, out-of-pocket expenses mount up as well: for power wheelchairs; door widening; ramp construction; communication devices – and more.
No Cure
“There may come a…time where I can no longer care for him at home.”
— PETER, JOHN’S HUSBAND
The Hidden Toll
First, there’s the burden of caregiving. Often, it’s 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 poorer 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.
A Film Grounded In Reality
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 fulltime caregiving; together, as an aging gay couple they find themselves at odds over the reality of an end-of-life decision.
“It is full of hard truths, difficult topics and so much joy.”
— VIDEO LIBRARIAN
Join Us!
We’re 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 currently battling this disease.
LOVING JOHN is a powerful tool that can be used a number of ways:
National PBS Broadcast reaching millions of viewers;
Screenings & Panel Discussions in partnership with colleges and universities;
Community Fundraisers with aligned organizations;
Custom Educational Tools for communities across the country.
Reach Out for More Information
