<div>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, <a href="https://www.theguardian.com/society/2021/nov/17/casey-harrell-the-climate-activist-taking-on-wall-street-and-the-muscle-wasting-disease-thats-killing-him" target="_blank" rel="noreferrer noopener">leading campaigns that have led to real change</a>, he has become the first human being on Earth to communicate daily through a device <a href="https://www.nytimes.com/2024/08/14/health/als-ai-brain-implants.html?unlocked_article_code=1.908.W_E5._RxptlgmiQAF&amp;smid=url-share" target="_blank" rel="noreferrer noopener">that translates his intention to speak into speech</a>.
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<div>It’s so important we keep Casey 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.
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<div>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.
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<div><strong>Why are we fundraising now?</strong>
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<div>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.
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<div>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:
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<li>Casey has lost his job as a full-time climate campaigner, and with it the 8 hrs of daytime support, which was paid for by his work.
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<li>Levana’s health and income is in a downward spiral. She is now on disability herself, while still providing 8-16 hours of caregiving a day, and mostly solo parenting their first grader who is in need of a lot more support than they are getting right now.
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<li>Care at the level Casey needs costs $45/hr, which he needs around the clock, and often with more than one caregiver at a time.
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<div>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.
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<div>All of this threatens not just our family, but the continuation of Casey’s activism and <a href="https://www.nejm.org/doi/full/10.1056/NEJMoa2314132" target="_blank" rel="noreferrer noopener">groundbreaking speech neuroprosthetics research</a>.
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<div><strong>Casey’s survival matters beyond our family</strong>
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<div>Casey is the only fully-functional speech neuro-prosthesis user in the world, as covered in the <a href="https://www.nytimes.com/2024/08/14/health/als-ai-brain-implants.html" target="_blank" rel="noreferrer noopener">NY Times</a>, <a href="https://www.nature.com/articles/s41591-026-04414-6?utm_campaign=related_content&amp;utm_source=HEALTH&amp;utm_medium=communities" target="_blank" rel="noreferrer noopener">Nature Medicine</a>, <a href="https://www.scientificamerican.com/article/brain-to-speech-tech-good-enough-for-everyday-use-debuts-in-a-man-with-als/" target="_blank" rel="noreferrer noopener">Scientific American</a>, and the <a href="https://www.cell.com/cell/fulltext/S0092-8674(25)00681-6" target="_blank" rel="noreferrer noopener">Cell</a> journal. He has become the keystone patient in this cutting-edge research, which uses implants in his brain to translate his intentions to speak into computer-synthesized speech.
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<div>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.
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<div>The pioneering researchers who depend on Casey’s brain are winning the most prestigious and lucrative awards in the field (see <a href="https://www.bci-award.com/2023" target="_blank" rel="noreferrer noopener">here</a>, <a href="https://indianexpress.com/article/cities/pune/dr-maitreyee-wairagkar-gruber-international-research-award-10419431/" target="_blank" rel="noreferrer noopener">here</a>, <a href="https://health.ucdavis.edu/news/headlines/brain-computer-interface-study-wins-a-national-clinical-research-award/2025/04" target="_blank" rel="noreferrer noopener">here</a>, and <a href="https://www.bwfund.org/news/bwf-announces-2025-career-awards-at-the-scientific-interface-recipients/" target="_blank" rel="noreferrer noopener">here</a>), but due to conflicts of interest, their benefits are unable to reach our family.
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<div>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.
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<div><strong>This Moment Is Crucial</strong>
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<div>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:
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<li>Backed by a fully-trained caregiving team we can depend on, we’ll have a steep reduction in life-threatening emergency situations.
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<li>We’ll hopefully be granted government-assisted 24-hr care, which caps at $20/hr, covering almost half of our care costs. We’re currently on the waitlist.
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<li>We will have found a consistent live-in/live-trade caregiver to reduce daytime and overnight care costs.
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<li>Casey may stabilize or even improve through participation in <a href="https://www.spinogenix.com/spinogenix-presents-topline-phase-2a-clinical-trial-results-for-spg302-a-first-in-class-als-treatment/" target="_blank" rel="noreferrer noopener">one of the most promising clinical trials to date </a>for ALS, which he is currently enrolling in.
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<li>Levana will be on a path to recovery and back to work full-time with increased capacity to parent.
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<li>Casey will be working with a new strategic advising endeavor for both climate and brain-computer interface groups.
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<div><strong>A closing note from our family</strong>
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<div><em>“What people rarely see is <a href="https://www.nejm.org/do/10.1056/NEJMdo007671/full/" target="_blank" rel="noreferrer noopener">what Levana carries</a>. 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.”</em>
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<div>– Casey
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<div><em>“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.”</em>
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<div>– Levana
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<div>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.
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<div>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.
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<div>If you prefer to make a tax-deductible donation, please write us directly here: info at collab change dot org.
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<div>We are humbled beyond words. Thank you for believing in us, loving us, and helping us find our way through.
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<div>With love,
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<div>Levana, Casey &amp; Aya
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<div><strong><em>Clear eyes, full hearts, can't lose.</em></strong>
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/98118903_1766119474674489_r.png" width="100%" />
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Still $40,555 to go. Help us build momentum.