SEPTEMBER 2023 | NEW STRETCH GOAL
To the ever-growing TEAM JOSÉ support squad, your response to our stretch goal earlier this year was phenomenal and enabled us to move forward with the installation of a ceiling lift to make José’s in-home transfers safer. The process took a bit longer than anticipated, but now that the ceiling lift is installed, it’s hard to believe we were operating without it. It’s been a total game-changer and lifesaver.
As we shared in our April update and this blog post, our next big move is to expand our care team by bringing on in-home care support. As José’s needs have increased, Jen has managed to continue learning new things and manage it all single-handedly—from feeding tubes to hoyer lifts, nebulizers and vents, external catheters, suppositories, wound care and more. All of it can be both physically and psychologically demanding, and it’s now more work than one person can handle on their own.
Having a dedicated home health aide will also free up some of her time to manage the increasing amount of patient advocacy effort required to ensure José's care needs are met, as well as coordinate among members of his care team, and enable more ways for friends and family to get involved.
Our preliminary plan is to test the waters with someone to refine / work out the role during the last three months of this year (Oct.-Dec.) on a trial basis, with the hope of transitioning to a more permanent role/gig if we find someone who’s a good fit.
As always, thanks for EVERYTHING you do to support us in this fight—your words of encouragement, meals, financial contributions, lunch buddy support, sharing our story, educating others about ALS, and so much more.
APRIL 2023 | UPDATED GOFUNDME GOAL + CAMPAIGN
Aloha, to the tremendous TEAM JOSÉ support squad! When we humbly launched this campaign on José's birthday back in 2021, we had two very discrete needs in mind: 1) modifications to our bathroom to make it safer for José as his ALS progresses; and 2) the costs associated with participating in the Healey ALS Platform Trial.
With the help of an ever-growing circle of support, we were able to complete the bathroom modifications and make seven trips in seven months to Texas Neurology in Dallas so that José could participate in a clinical trial and help advance research into future ALS treatments.
Since then, people have continued to contribute beyond our wildest expectations and we've greatly exceeded our original funding goal of $25,000. Initially, we had planned to close the campaign to new contributions but after wrestling with the decision since the end of 2022, we've come to recognize the hard truth that we still need help.
The cost of living with this ALS is significant—on average, it's well over six-figures per year and over seven-figures for the duration of the disease (if you’re curious, just Google, “cost of living with ALS”). So while we are extremely privileged to have good health insurance and the means to purchase most of what’s needed, now that we've depleted our savings there’s no way we can continue to keep pace with the growing expenses that come with advances in disease progression.
And so today, rather than closing this campaign down and starting anew, we're choosing to increase our goal and update our story so that the full history remains here for all to read, share, contribute to, and learn from.
INCURRED EXPENSES TO DATE - not exhaustive, just most of the big stuff!
- $3,200: mobility scooter (donated to ALS Assn. when no longer able to use)
- $3,300: walkers, rollators, transfer wheelchair, hoyer lift
- $1,800: shower commode chair, shower bench
- $3,000: lightweight electric wheelchair
- $3,000: co-pay for ($69K) Permobil power wheelchair
- $30,000: bathroom modifications
- $16,000: seven trips to Texas Neurology for clinical trial
- $2,400: total est. annual co-pay for rental of Trilogy (ventilator)
- $1,000: total est. annual co-pay for external catheters
ANTICIPATED EXPENSES - priority needs coming up for 2023
- $17,000: ceiling lift system (final estimate + timeline pending)
- TBD: home health aides (any assistance beyond in-home PT, OT)
- TBD: heavy-duty reclining shower chair (after lift system installed)
- TBD: travel to participate in an EAP (expanded access program) to access experimental ALS drug therapies still in the clinical trial phase of development
We also want to be sure to acknowledge several grants from Team Gleason that covered other significant expenses:
- grant for voice banking (2021)
- grant for seat elevation for power wheelchair (2022)
- grant for eye gaze machine co-pay (2023)
...as well as the loving support of John and Anna Barrett who hosted us for most of our visits to Dallas in 2021 and 2022.
In the spirit of transparency AND helping to create more awareness about what living with ALS looks and feels like, we'll continue to share updates here on our GoFundMe campaign as well as the Team José website.
As always, thanks for EVERYTHING you do to support us in this fight--the words of support and encouragement, meals, financial contributions, lunch buddy support, sharing our story, educating others about ALS, and so much more.
SEPTEMBER 2021 | ORIGINAL GOFUNDME CAMPAIGN
Aloha, friends and family
Since the announcement of my ALS diagnosis, many of you have asked how you could help. Jen and I have been overwhelmed with your love, aloha, and support. Thank you for being a part of Team José.
Earlier this month, we traveled to Texas Neurology, located in Dallas, for a series of preliminary tests that put me in the queue to be enrolled in the Healey ALS Platform Trial. Participating in a clinical trial is my way of helping science find a cure for ALS, and it may also lead to opportunities for me to access promising new drug treatments.
Everyone at Texas Neurology was great and we're immensely grateful to the many people who helped to make this connection possible.
Yesterday, we received the happy news that I've cleared the initial screening for the trial (hooray!) and we are eager to complete my enrollment and get started.
We anticipate regular trips between Dallas and Honolulu over the next six to seven months. While the travel will be stressful, it is an important part of my journey and fight. We are lucky to have begun building a great healthcare team, but Hawaii’s location and small number of ALS cases mean that participation in medical trials (and even access to some medical treatments) requires visits to the mainland.
ALS comes out of nowhere and immediately makes a significant impact on one’s health, lifestyle, and financial resources. We've established this fundraising campaign to help with two immediate needs:
- expenses related to my participation in the clinical trial (mostly our frequent travel to/from Dallas)
- home modifications that will make our living space safer, and extend my independence as my movement has become more limited
Many of you have asked how you can help. Contributing to this campaign is ONE way to help.
If you are able to contribute financially in any amount, we humbly welcome the monetary support. That said, please know that there are other equally important ways to lend your support--through advocacy, words of encouragement, and more. We've shared a few ideas on the Team José website and encourage you to visit the site and subscribe for updates.
Thanks for being part of Team José and my circle of support. I’m grateful that you are joining Jen and me in our fight AND for helping build the larger wave needed to ensure that we take ALS from terminal to treatable. Treatments are within reach that will halt progression and make this a livable disease for me and others currently afflicted by this cruel disease.