Last year, Casey first had trouble running, then began suffering frequent fatigue. He thought the cause might be sleep deprivation from having a newborn daughter and the stress of leading a news-making global campaign that successfully pressured BlackRock, the world’s largest asset manager into dramatically changing course on climate .
But Casey’s physical challenges only increased. He was soon walking with a limp, and took several falls. This spring he began losing strength in his hands. Finally, in May, the neurological medical team at UCSF Medical Center diagnosed Casey with ALS, also known as Lou Gehrig’s disease. About six months into Casey’s diagnosis, he now uses a walker and needs assistance with daily tasks. Previously thoughtless things like typing and gripping utensils are now more difficult and he’s experiencing intense muscle spasticity which causes pain and cramping throughout the day.
This has been an agonizing turn of events for Casey, his wife Levana, and their two-year old daughter Aya. Knowing what ALS does and fearing what lies in store for him and his family has been a harrowing experience. But Casey is a resilient and focused person. This is his new campaign. He’s determined to live a long life, and he wants to help everyone suffering from ALS get the support and treatment they need.
Of those diagnosed with ALS, half live less than 2.5 years and only 10% live longer than ten years. Casey is doing everything in his power to beat these odds, starting with slowing his progression. While current FDA-approved ALS treatments are marginally effective at best, there is actually more hope on the horizon than ever before as new treatments have shown tremendous promise in trials. In fact, many in the ALS medical community believe that understanding of the disease is at a critical turning point.
The treatments which have shown encouraging results in trial are dramatically slowing, stopping, and even reversing symptoms in some patients. They could be a long-term bridge to even better therapies and perhaps a cure. Many of these drugs seem to work better with ALS patients who are less progressed and still have motor neuron function. The ones furthest along in trial will likely be FDA-approved in the next 6-10 months but are not accessible yet. Some other novel treatments are accessible now but have astronomical out-of-pocket costs. What this means is that for Casey to be able to benefit from the advances that are coming, he needs to access the expensive drugs now. He is seeing some great doctors and has begun receiving some of these novel treatments, which are beginning to slow his disease progression. But Casey and Levana have quickly been stretched far beyond their means, with annual costs of hundreds of thousands of dollars. To have a fighting chance against this terrible disease, they will need a lot of help for this immediate 6-10 month time period.
Casey and Levana have just moved houses (still in Oakland) to live in a place that doesn’t have 3 flights of stairs to the entrance. Even as their lives have been upended, they are powering forward, working their jobs, going to multiple care providers every week, and raising their dynamo two-year-old daughter. It’s a lot. As activists for social and climate justice, Casey and Levana are reluctant to reach out for financial help at a time when so many are also in critical need.
While he has never sought the spotlight, Casey has dedicated his life to service in support of people and the planet. He helped start the anti-sweatshop movement (United Students Against Sweatshops) and won his first big corporate campaign against Nike. He successfully pressured Facebook, Apple, Google and others to move their data centers off coal and commit to 100% renewable energy. Most recently he designed and led the BlackRock campaign which has become a massive global movement that is bringing about the largest financial divestment from fossil fuels ever. Casey is one of the most strategic and impactful campaigners most people have never heard of.
We ask on behalf of Casey and Levana and Aya that you give whatever you can to make it possible for Casey to receive the treatment he needs to survive this. He is still working full time for the climate, and wants to continue. He can only do so if his ALS symptom progression is dramatically slowed down. Help him stay in the saddle. Our world will be a better place if he does.
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