Our Impact
The JBCCP is proud to say our small grant program has made big impacts. Early in this third year of operation we have already given one grant of $5000 (after 12 grants in 2025) to a family that has lived with ALS and invasive mechanical ventilation for 11 years. Charlie Wren and his wife Angelina have been going it essentially alone – imagine, if you can – in their small home in Central California. Our grant is allowing Angelina to get additional help to care for Charlie – a rare “luxury” for them.
We know how the stakes rise when a person chooses intubation to prolong life. It thrusts people into perpetual uncertainty about how the increased care needs will be met as time goes on with dwindling finances. A home healthcare industry estimate of the minimum number of caregivers needed to safely care for a medically complex person such as Charlie is four. To create and sustain such a team of caregivers is a distant dream for all but the most well-off or extremely fortunate. Charlie has only Angelina. This puts the health of both of them in a precarious position, making grants like ours a true life-line. If you’d like to learn more about Charlie and Angelina, they appear in the PBS documentary Matter of Mind – My ALS. https://www.pbs.org/video/matter-of-mind-my-als-xvyhjd/
We are still a small and completely volunteer organization with rock bottom overhead. Nearly every penny of what comes in from donors goes quickly out to our recipients who need it. Apart from insurance and a few postage stamps we have almost no expenses. We love our “farm to table” approach and it is working great on a small scale. Help us scale this miracle up and give people with ALS and their families and caregivers more of a reason to keep fighting for breath. Your donations are 100% tax deductible and nearly 100% goes to people like Charlie and Angelina who are waiting for a cure while coping with relentless care needs. If we can’t yet give the cure, let’s at least respond to that need.
Testimonials
My wife Amy has been living with ALS for seven years. The emotional and physical burden of her care doesn’t just continue—it expands and multiplies. Sometimes it’s hard to even see through the cloud of stress we’re living in. Any minor shift feels really freaking major. A change in her care routine, a hiccup in finances, a scheduling issue with caregivers, supply chain problems—it’s all like smacking a deep bone bruise.
I’m Amy’s primary caregiver. I’m up at least twice a night doing suction, repositioning her, checking the ventilator, making sure she’s warm enough. I’m ON all day, every day, managing trach care, feeding tube, bathing, oral care, bathrooming—everything. This JBCCP grant money has allowed us to bring an extra caregiver on and provide me with a bit more respite care. The grant money has also allowed us to pay for incontinence supplies-HUGE and extra tissues instead of out-of-pocket. The tissues may seem small but with all the salivating Amy experiences she goes through tissue boxes daily for clean up—we need the softest, which means the most expensive type or her face gets raw.
When you’re drowning, even a single breath of air matters. This JBCCP GRANT gave us that breath.
Thank you JBCCP!!! – Dante Diego – Petaluma, CA
Tim was diagnosed with sporadic, limb-onset ALS in 2018. It blew our minds because prior to that diagnosis, Tim was the picture of good health: eating organic foods, working out 3-5 days a week, running 6K’s every other day and having a good quality-of-life with friends and lots of love surrounding him. How could muscle fasciculations mean that he was going to die? He was a Pharmacist, and we both believed the diagnosis after a 2nd opinion, but it didn’t mean we weren’t in disbelief. The future we thought we had was taken away with three letters: A.L.S.
Tim didn’t want a trach – a deeply personal decision – and so we didn’t think we’d have much time to enjoy each other in this short life we all get. We both quit our jobs and battened down to research ALS, get the equipment we could in place, and love on each other for as long as we had left.
While the first few years Tim had what was deemed ‘slow progression,’ – something we were grateful for – Tim was slowly losing the ability to perform the activities of daily living on his own. By 2021, he could no longer perform any of the hobbies he loved to do – like working on our house, or gardening – and I was feeding him while he was choking on foods, even though we changed the consistency and used liquid thickener.
By 2022, Tim was very involved in advocacy. He developed a program for national nonprofit I Am ALS that taught student clinicians how to care for someone living with ALS in a panel series over Zoom, with panelists made up of caregivers and people living with ALS. At this point, Tim was using his Eyegaze full-time for communication with everyone but me – his wife – and so to do this advocacy, he was painstakingly writing every email with his eyes. It was slow going but it mattered. Now, that program – which is ongoing – has trained thousands of students on how to better care for someone living with ALS before they first encounter them in the clinical setting.
Tim and I were also Research Ambassadors for the Northeast ALS Consortium, and he in particular worked on other small teams – like ALSGEO, mapping prevalence of ALS in the United States – while I cared for him, and started attending school for a Master’s in Public Health remotely. I knew that I couldn’t go back to working in media, and that my calling was to work on increasing the number of skilled, qualified neurodegenerative disease caregivers in our area, and hopefully beyond.
Tim died on January 1st of this year. In the year prior to his death, I had been actively caring, or on call, for him 24/7 for years until we received the care grant from Jason Becker Creative Care Project. Now with me, Tim received excellent care. He got foot massages, hand massages, I diligently looked for pressure sores and worked to prevent them. I knew where every pillow had to be positioned, and there were more than a dozen of them, to his liking. We had ‘spa nights’ in the shower that made showering more about dignity, and joy, than just getting clean. He chose his shower gels – his favorite was Lush’s chocolate gel – and the ‘treatments’ he wanted, like additional head scratching with his shampoo. He was well loved. He couldn’t use his arms, or hands or legs. He couldn’t speak but he still had a voice.
It was difficult, but oh so very necessary, to bring in help. Tim emailed the local University’s School of Nursing, and we interviewed students in the Bachelor’s program to come in for part-time care a couple of shifts per week. We finally landed on a student we both agreed would be very alert to Tim’s specific needs, but we had no means by which to pay her. ALS had financially exhausted us in the six years leading up to this point.
The grant made it possible for us to bring Omina in, who gave Tim devoted and specialized care in a way that made both Tim and I comfortable. Not only did this grant help Tim continue to live with dignity, but it also probably saved my own life by giving me the rest I so desperately needed to power up again to take care of Tim in the way he deserved.
Tim is the love of my life, and we had a beautiful 22 year-relationship filled with joy, even in ALS. In fact, some of the most meaningful moments in both of our lives individually, and as a couple, happened while Tim and I were living with this disease. Thank you so much for helping us to keep going for a little longer. Those moments to us were precious personally, and Tim used them to not only love me, but also to continue with his advocacy to help other PALS.
Every person living with ALS has potential, and skills, so long as they have people who love them rooting for them. We were good at advocacy, but we were not good at fundraising to cover care needs, or at securing a staff of people to help care for Tim. We all have something to learn from each other in this life. Thank you for using your love of people, and your skills, to fundraise to help us get more time. It’s what we all want with the people we love so dearly. What a precious gift.
– Emily Lowrey – Buffalo, NY