To the tremendous and ever-growing TEAM JOSÉ support squad, it’s difficult to find adequate words to express our appreciation for all that you have done and continue to do to help us along this journey. Last Friday, our dear friend Amy set up a new GoFundMe campaign to raise funds to support us as we enter into a new phase of our journey living with ALS. We’re blown away to be three days in and 25% to our goal.
As Amy shares in the campaign, we’re preparing for a big transition as José steps down as president and general manager of Hawaii Public Radio in July. Of all the changes and losses since his diagnosis three years ago, this one is a particularly tough one. Being in radio was a childhood dream that became a forty year career in broadcasting. It’s not only a huge part of his identity, but the source of life-long friendships and proud achievements. Most importantly, it’s one of the few things that ALS has yet to take from him.
While José is certainly more than his job, his role provides him with purpose and keeps him connected to colleagues and community members who’ve become friends and family. This campaign is merely the first step in a number of actions we hope will help us to prepare for this transition. This blog and our #TeamJosé social media haven’t been as active as in the past, and we will find ways to share updates more frequently.
One of the things we most want to build is a bigger circle of social support—from social visits to light caregiving duties. This is tricky for many reasons, but most importantly to find ways of welcoming people into our home and lives that doesn’t add to the already mind-boggling management of his medical care or overly deplete his limited energy as someone living with ALS. He has a weakened voice that sometimes fails him, the inability to move or care for himself, and declining pulmonary function. I share this disclaimer humbly as a way to ask for patience and grace from those of you eager to help as we navigate this new territory.
Finally, we also want to share that the funds raised from this campaign go directly to an account set-up specifically for José’s care – with the biggest current expense being payroll for a full-time, in home caregiver and personal assistant who helps me manage his 24/7 needs and well-being.
If you’d like to receive email updates when new posts are published on this blog, you can sign-up here. Our most active social media channel is currently Facebook, where you can follow the Team José page, and well as our personal profiles.
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