After a bit of foot-dragging and and other delays, we’re finally ready to update our list of ways to get involved with Team José 🙂
It may take us a couple of weeks to work through next steps and follow-up with everyone who responds. Please be patient with us and also know that we may not be able to accept all offers of support. Asking is hard, turning help down is even harder. All we can do is ask for your grace and urge folks not to take it personally, and to keep in mind that the needs and opportunities will only GROW with time. We appreciate you more than you know.
Support Squad Roles
🍲 MEAL SUPPORT / DELIVERY / DROP-OFF
A monthly calendar for meal support is managed in the ianacare app (currently includes most Wednesdays + Sundays each month). Meals can be home-made, from a local restaurant/store, or shared via a food delivery service (e.g., DoorDash, BiteSquad).
😋 LUNCH BUDDIES
This is something new that we’re planning to test during October. It’s much harder for José to feed himself, so we’re looking for a small team of folks who may be interested and available to join him as a lunch buddy once or twice a month, or perhaps weekly. Schedule would be sometime between 11:30 a.m. to 1:30 p.m. Monday, Tuesday or Thursday, and location would be either at Jen and José’s apartment or in José’s office at Hawai‘i Public Radio (both in the Ala Moana area; directions and parking instructions will be provided). This requires being comfortable with unpacking and/or heating up food, sitting in very close proximity to José to safely assist with feeding, some light clean-up (tidy-up his desk after eating, dispose of any trash), and helping to wipe/clean his face and hands after each meal. This opportunity also requires a firm commitment; if a lunch buddy cancels at the last minute it will be difficult to replace them on short notice and may result in José missing a meal.
📱 IANACARE APP ORGANIZERS
Jen has been managing the ianacare app as a way to streamline the many offers of support and to coordinate logistics for meals, rides, and other activities. While we’re no longer in need of rides (José’s power wheelchair requires a special vehicle for transport), we do hope to add opportunities to the app to keep everything in one place and make it simpler to manage. We’re hoping to experiment with forming a small team–perhaps two to three people–willing to help tag-team the ianacare app management. This will require downloading the app to a smartphone, being comfortable responding to requests to help, answering questions from other members of the support squad, and being able to gently and kindly decline or re-direct offers of help that we aren’t able to accept due to timing or other factors.
📣 CHEER SQUAD
One of the MOST helpful things anyone can do for José is to let him know you’re thinking of him and to send words of encouragement and support. The best way to reach out is via email, postal mail (he loves getting cards and letters!), comments on blog posts, and private messages sent through the website or social media. ANYONE can be part of the Cheer Squad at anytime, but we’d love to have someone (or a pair of people) serve as the primary contact to respond when folks have questions like where to send mail, what email address to send messages to and so forth, AND to help rally support during any particularly tough points in time that we need to mobilize the Cheer Squad.
️🤩 SOCIAL MEDIA TEAM
We’d like to do a better job of using the Team José social media profiles to share information about ALS, including research, advocacy, and other opportunities to raise the profile of and/or support people living with ALS–including their families and caregivers. There are several ways to help, including: collect or curate content to be shared on social media; write posts or create graphics; schedule and/or publish posts; acknowledge folks who share content or comment on posts, etc.
If anything is unclear, or you have suggestions of other ways to help be sure to let us know