The Jason Becker Creative Care Project pilot program:

The NOT DEAD YET FUND

Our goal for 2025/2026 is to give grants of $5000 to as many people as possible who face chronic medical challenges comprised of a combination of loss of movement, loss of speech, ventilator dependence, and impaired ability to eat/drink by mouth.  In the future we hope to make larger grants in order to make true optimal care possible for our recipients, and assist them as necessary to set up Special Needs Trusts to protect their financial stability.  The goal for our 2025/2026 Not Dead Yet Fund program budget is $100k. This is an ambitious sum, but keeping people NOT DEAD YET does not come cheap. If a person needs reliable caregivers, and a caregiver needs a living wage, then the math becomes:

Hourly living wage (California) $40 x 24hrs x 7day/week x 52wks/year
Total: $349,440 per person/year

Add an upgrade in housing, transportation, equipment and supplies, the number goes up.  We hope to increase our capacity to grant assistance very quickly, as many people needing care do not have the luxury of time, and living with the stress of inadequate care takes a heavy toll, accelerating deterioration.

We believe that the effects of the infusion of essential resources will be dramatic and result in measurably better outcomes, and that the resulting data, when studied, will irrefutably demonstrate the importance of effective, reliable at-home care. Such conclusions must eventually be reflected in healthcare policy, and someday it will not be left to non-profits like us to close all the dangerous, life-threatening gaps.

Will you be part of this never attempted work? Here’s how you or your organization can help.

If you are a person who fits the grant criteria (living with ALS or other condition likely to cause similar effects) and would like to apply for our Not Dead Yet small grants, please apply here. Our grants become available as funds are available.