Support José & Jen to LIVE with ALS

Aloha to friends near and far, including those I have yet to meet. I’m setting up this campaign to raise funds to help my dear friends, José and Jen, as they enter into a new phase of their journey with ALS.

For those unfamiliar with ALS and José’s story, in 2019, at age 55, he was in the best shape of his life. He worked out four days a week, ran mountain trails in Hawaii, and loved life every day. This is when the earliest signs that something was wrong began to surface.

In late fall 2019, he noticed some issues with his running gait and balance, and then the leg cramps and spasms started. His doctor thought he was just overexerting himself, so he took some time off from running. But he knew his body and felt certain that something was not right. In early 2020, he was referred to a neurologist, who ordered all the possible tests, from blood work to MRIs, spinal taps, and EMGs.

At first, everything came back negative. In fact, after months of tests, all the ‘bad stuff’—including ALS—was crossed off the list, and he was left with a catch-all diagnosis of paraparesis, essentially a partial inability to move your legs that can be both chronic and progressive. But José continued to push, knowing that something more was happening to his body.

During the first few months of 2021—peak Covid—everything changed. After a four-year courtship, Jen and José got married in January, bought a condo in February, and following a string of consultations in early Spring with three other neurologists, José was diagnosed with Amyotrophic Lateral Sclerosis (ALS, a.k.a. Lou Gehrig’s disease) in May.

Immediately thereafter, they went public with his diagnosis, launched a blog to share their experience living with ALS, and flew from Honolulu to Dallas seven times in six months to participate in the Healey ALS Platform Trial.

As they approach the three-year anniversary of learning to navigate ALS together, however, his disease progression has taken a toll. José announced that he would be stepping down from his role as president and general manager of Hawaii Public Radio in July.

At this stage in his ALS progression, José is essentially a paraplegic. He still feels things but cannot lift or move his limbs or body. If something can’t be done by voice control or his eye gaze machine, then he’s reliant on others to do it for him.

Imagine all the things he’s no longer able to do for himself:

• feed, bathe, or dress himself

• turn in bed

• brush his teeth

• write or type

• hold his phone

• scratch an itch

• operate his power wheelchair

• wipe a tear rolling down his cheek

• hold Jen’s hand

• hug his grandchildren

While it’s remarkable that he’s been able to continue working as he’s slowly been robbed of his ability to move and control his own body, this transition introduces new challenges.

Jen has continued to work while taking on his care needs, but as José steps out of his role, she will become the primary breadwinner. And while this transition will unlock some benefits that were previously out of reach, the out-of-pocket costs of living with ALS amount to thousands of dollars per month.

This campaign is intended to ease the transition and allow them to continue making decisions based on the best care options available for José’s condition and ensure that he can continue to invest all of his limited (but remarkably positive + hopeful) energy into raising awareness, attracting funding, and increasing access to emerging treatments that will one day make ALS a livable disease.

Any contribution you can make is greatly appreciated and will go a long way to help. Mahalo for being here and for considering support.