December 2021
I wanted to give you all an update about me, my life, and the incredible impact of what you have given to me and my family.
The good news: I am still here! Even better, I can still walk, talk, and eat - things many people with ALS cannot do. I am almost at the three year mark from when my symptoms began; I have already outlived the average ALS patient. I am doing all I can to slow down the disease progression, and with your help I am having some success.
Tangibly, this means everything. It means I can still share a delicious meal with friends and family. It means that I can still tell my daughter Aya that I love her in a voice, even though it is gravelly and garbled, that she can understand. It means I can still stand under my own power and hold and hug my wife (with a little assistance). I never thought that at age 43 I would be so thankful to be able to do these seemingly small things, but they mean the world to me.
It also means that I can still be intimately involved in the fight against climate change. I have received massive support from my team at work, and we are charging ahead with multiple campaigns focused on climate-friendly investing and shifting money away from polluting companies. I was fortunate to have Bloomberg cover my campaign work in March and then have the Guardian publish a more in-depth piece on me and my fight against ALS this November.
And now, the challenging news: I am still getting worse. This year, I have seen a deterioration in my ability to use my hands, which means I can no longer type my beautiful prose or eat delicious vegan food on my own. Furthermore, my voice is becoming harder to comprehend, meaning that even lifelong friends find it harder to understand me or my jokes. Despite my best efforts and accessing the best integrative / holistic medical care available to me, I have not stopped the disease’s progression, and the costs associated with ALS are astronomical.
You and the rest of my community have helped fill this gap. With your help, I have been able to:
Access critical medicine and therapies that are effectively slowing my disease progression
Buy a wheelchair that allows me to turn on a dime and able to race my daughter around Lake Merritt
Buy a dope mobility van that enables us to travel to doctors appointments and Bay Area trails
Afford medical help and physical therapy when my “best-in-class” insurance denied me coverage.
But the costs keep mounting and are well into six figures annually. In 2022 I will need to pay for an upgraded power chair, a speech generating device and other adaptive gear which insurance will only partially cover, in addition to monthly medical therapies out of pocket. Our top priority is to find specialized caregiving help. I do not need around the clock support, but I do need help, and more than anything Levana needs a break.
Your support and generosity has ensured that I am having more time and better time to spend with my family and friends. I know that many of you dug deep to be able to give when this fundraiser went live over a year ago, and due to the massive costs of ALS, I am asking for your help once more. If you can give again, that would be wonderful. Please share this widely with others in your community. I plan to update this fundraiser more frequently. I hope you have a wonderful holiday season, and please go hug someone you love.
December 2020
Hi friends,
I miss holding my daughter. I can still pick her up. But it’s hard.
Since early 2019, I have been experiencing a range of troubling, worsening neuromuscular related symptoms in my body. I first noticed having troubling running as far or as fast as usual, and I started experiencing more frequent fatigue. I thought it was likely stress from work where I was launching a global campaign on climate finance, or sleep deprivation from Levana and I having our newborn daughter. But things continued to get worse - I began walking with a limp, and by the end of 2019, I had had a few falls both walking and biking.
Throughout this time, I saw a range of medical practitioners, where I underwent neuromuscular exams and was poked and prodded. I tested positive for Lyme’s disease and other co-infections and underwent antibiotic treatments. Despite trying a range of healing modalities -- acupuncture, dietary changes, hyperbaric oxygen therapy, and so much more -- my strength and symptoms were not improving, and by spring 2020, I began to lose strength in my hands.
So in May, Levana and I went to one of the world’s leading neurological medical teams at UCSF, and I got confirmation that I have ALS.
Yes, that ALS. Absolutely brutal, agonizing news.
It’s very unclear how this disease will progress with me. About five months into my diagnosis, I can count many ways in which my life now differs from most of my friends. I now need assistance to walk, and getting dressed by myself is very difficult. My hands are so tight; typing is a chore and I grip a spoon or fork like a caveman. And my beautiful handwriting is less legible. Thankfully, my symptoms appear to be mainly in my limbs -- my talking, breathing, and swallowing are relatively unaffected at this time.
Knowing what ALS does and wondering what lies in store for me and when is also an incredibly mentally harrowing experience.
Everyone’s experience with ALS is different; doctors theorize that the disease is so heterogenous that there may be many types of ALS. They just don’t know. The disease is considered 99.99% terminal by Western medicine, and half of all people diagnosed die within 2.5 years of diagnosis. But - 10% of people live longer than 10 years. Generally people who live longer start progressing slower than me. There’s really no point in prognosticating what lies in store for me because my journey has just begun and I’m not going to sit back and passively have this disease devour my life. There are treatments to try, new knowledge to implement, and I’m excited to do it all. Also, it is both a terrible time to have ALS and the very best time to have this disease because there are more drug treatments on the horizon than ever before with many showing tremendous promise in trial.
The near future will not mirror the past for me, or anyone else with ALS.
I'm going to fight for the best and longest quality of life that I can have. I am a campaigner and this is my new campaign.
I’m already paying massively out-of-pocket for some of the most advanced treatments in the world -- and they are beginning to slow the disease progression. For those of you who know about ALS, you may know that current treatment options are really bleak. If you squint you can see some good news on the horizon for ALS. This includes: A new drug that has shown modest benefit in slowing ALS progression which I am taking a part of and soon be taking the entire drug combination (even though this drug is not FDA approved, I will pay out mega $$ of pocket for it until it is). We soon will know the data on the NurOwn stem cell trial, which is the big important therapy showing so much promise in patients.
These therapies and a few more could provide the first long-term bridge to a future cure. I am not wearing rose-colored glasses but am executing a plan now to live a good, long life. I need you to understand that this is the frame I am operating in - one of healing, not dying - and I need you to meet me there.
We have created this website to help you stay informed and know how you can best support me, Levana, and our daughter as we navigate this time and the healing journey we are on. If you sign-up, you’ll receive an email when I post updates to this section of the website.
Much love and strength,
Casey