My name is Levana. My husband Casey Harrell has had ALS (Lou Gherig’s Disease) for over seven years – five years longer than we were told he would live. In that time, he has not only continued to work tirelessly as a climate activist, leading campaigns that have led to real change, he has become the first human being on Earth to communicate daily through a device that translates his intention to speak into speech.

It’s so important we keep Casey and his treasured brain alive – for our family, for the environmental movement, and for the advancement of research to give voice to millions of people who desperately need this technology themselves.

First, I just want to say how overwhelmed with gratitude we are. The love and generosity that has flowed toward our family has been extraordinary. Friends, family, and strangers have cooked for us, cared for our seven-year-old Aya, improvised through medical emergencies, given repeated donations, checked in, and generally lifted us through the nights and seasons we didn’t think Casey would survive. We don’t always have the energy to thank people the way we want to. Our capacity is limited. But our love and gratitude are not. We feel held by a community far larger than we ever imagined.

Why are we fundraising now?

Surviving ALS is expensive. The national average annual cost of care is $300,000/year — on top of normal living expenses. Most families enter hospice simply because the price of staying alive is out of reach. It’s extremely rare for a family like ours – without the wealth to afford a full-time medical staff – to reach year seven of ALS. Casey is alive today because of our community.

We raised funds in the year after Casey’s diagnosis, and they were life-saving. But those resources were fully spent down years ago on equipment, therapies, and emergencies. We are now at a point where:

We are stretched past the edge — physically, financially, emotionally. Right now, Casey’s survival relies on someone who can barely keep her eyes open. Avoidable medical emergencies keep happening because we simply do not have enough care.

All of this threatens not just our family, but the continuation of Casey’s activism and groundbreaking speech neuroprosthetics research.

Casey’s survival matters beyond our family

Casey is the only fully-functional speech neuro-prosthesis user in the world, as covered in the NY Times, Scientific American, and the Cell journal. He has become the keystone patient in this cutting-edge research, which uses implants in his brain to translate his thoughts into computer-synthesized speech.

With 27 years experience working in advocacy, Casey is uniquely positioned to pressure the emerging AI industry to adopt ethical and environmental standards with his rare first-person voice, working to ensure these technologies benefit disabled people. His lived experience and leadership are shaping an entire emerging field.

The pioneering researchers who depend on Casey’s brain are winning the most prestigious and lucrative awards in the field (see here, here, here, and here), but due to conflicts of interest, their benefits are unable to reach our family.

The research coming from Casey’s brain is completely unique. But it is fragile. And it is at risk of ending if we cannot stabilize our home long enough for him to survive.

This Moment Is Crucial

We likely won’t be asking in the future. This is a bridge moment to carry us to a different place. With your support, this is where we believe we’ll be 9-18 months from now:

A closing note from our family

“What people rarely see is what Levana carries. The constant emergencies. The medical crises at 3am. Doing the emotional labor of parenting solo while juggling work, finances, and my care. She is keeping me alive on almost no sleep, no backup, and worsening pain from her own disability from a progressive connective tissue disorder. I watch her push past every limit, every day, out of love. And it is taking a devastating toll on her health. Without real rest and real help, she cannot recover. Without her, I cannot survive.”

– Casey

“Casey is a warrior. He lives with suffering that most people will never see. Respiratory crises. Severe muscle weakness. He literally cannot breathe without the right support. He navigates pain, fear, and exhaustion, and still shows up for Aya’s bedtime, still jokes with friends, still advocates for the climate, accessibility, and ethics in brain-computer interface research. He is brilliant, brave, and deeply committed to people and justice — even as his body fails him.”

– Levana

We know the world is on fire. So many are suffering. We ask humbly, with full awareness of the context we’re all living through.

But if you are able — whether through a donation, by sharing the fundraiser, or by offering other forms of support — you will be joining our community of survival, solidarity, and love. You will be keeping our family afloat during the most precarious chapter we’ve ever faced.

If you prefer to make a tax-deductible donation, please contact us here.

We are humbled beyond words. Thank you for believing in us, loving us, and helping us find our way through.

With love,

Levana, Casey & Aya

Clear eyes, full hearts, can't lose.