Help Steve Fight Fast-Progressing ALS

UPDATE AUGUST 2024: 

It has been one year since my first ALS symptom emerged in August 2023 in the form of muscle twitches in my biceps and shoulders. Unfortunately, I have not responded to any treatments thus far and have experience rapid symptom progression. Despite this, I continue to fight the prognosis and have also turned my focus to raising awareness, advocating for more patient-centric clinical trials, and a faster pathway to get novel treatments to market and in the hands of patients who need them. 

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To the shock and grief of our family, our little brother Stephen was diagnosed with ALS on November 21, 2023. Watch Steve’s video sharing his diagnosis below.

In August, he began to experience muscle twitches in his arms. Soon after, in September, Steve tried to run a few paces only to find he could not. Within days his legs became inexplicably weak, his balance unsteady. He sought a neurologist who sent him for an MRI. It was the first of many tests. Now, everything in his life - and ours – is changing.

Steve’s symptoms are progressing rapidly, but his quick diagnosis affords him a rare advantage. Rapid access to treatment and clinical trials are Steve’s best hope of slowing ALS. We are so impressed with our little brother’s remarkable calm and strength in the face of this devastating diagnosis and think you will be too. We decided to turn to you and Go Fund Me to help Steve fight ALS!

Steve’s Hopes and Goals

At this moment Steve’s priorities are to slow the ALS with the 3 Rs, the FDA-approved medications for ALS: Rilutek, Radicava and Relyvrio. His hope is to slow his symptoms enough, early enough in his disease progression, to benefit from a Phase 2/3 clinical trial and further increase his chances at survival. Steve’s fervent belief is that with a multimodal, all-in approach using the best of science and nature, he can beat the odds!

Your GoFundMe Contribution Will Help Steve Access Treatment and Clinical Trials

We want to empower Steve to seek the treatments and trials he needs to slow the progression and give him the best odds of witnessing a breakthrough in research that could turn the tables on ALS. In the next few months, Steve’s costs will include costly copays for expensive medications, cost of medications not covered by insurance, insurance premiums, specialized treatment protocols, travel and accommodation while seeking the best clinical trial, and eventually, assistive devices like a motorized wheelchair. Your support will directly contribute to ensuring Steve gets fast, quality care in this crucial early stage of ALS. Thank you for standing with us, making a difference in Steve's fight against ALS!

Get to know Steve

It wasn’t easy being a gay kid with his mom and grandmother as his BBFs, but Steve’s awkward childhood spent nerding out with comics and video games sowed the seeds for his creative brilliance. After getting sober in 2010, Steve committed his life to nutrition and fitness, becoming a devoted attendee of Barry's Bootcamp's high-intensity fitness classes. Today, Steve limps, tires easily, and walking requires effort. As a graphic designer and animator, Steve’s quick hands are his livelihood, yet the ALS symptoms have spread to his left hand. He faces losing his career, income, and mobility.

A Big Sister’s Commitment

“Stephen is ten years younger than me (as he reminds me often)! I fed him bottles, dressed him up in silly outfits, and watched over him as he found his way. My son Taiyo (21) still awaits his uncle’s visits, especially his gleeful spirit and generosity, even if some of his Uncle’s Christmas sweaters are a little... extra. You might think being married to someone with Multiple Sclerosis (MS) prepared me for ALS, but ALS feels like MS on steroids. It is an incredibly cruel, fast disease. I will be with Steve on his ALS journey. We need help, though, in offsetting the financial burden that can accompany the psychological and physical devastation of this ruthless disease. Thank you!” -Debbie

A Big Brother’s Sobering Words

I come to you with a heavy heart. Since I am the accountant of the family, I have been trying to prepare my family for the financial realities of being diagnosed with ALS in the US. In contrast to Canada's publicly funded healthcare system, the costs of medical treatments and insurance in the U.S. are staggering. Steve has already incurred close to $40,000 in costs to obtain his rapid diagnosis, and as we look ahead, his annual medical expenses are estimated to surpass $250,000 USD next year. The two most common reasons for people experiencing extreme financial hardship or personal bankruptcy in the US are loss of income and medical expenses. Steve is about to experience both. Even in Canada, where essential services are covered by the government, the financial burden for ALS care is considerable, ranging from $75,000 to $100,000 annually. At this point, given the very rapid progression of Stephen’s symptoms, a too-early return to the slower Canadian medical system could be devastating for his chances. -Robert

What is ALS?

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. You might have heard it called Lou Gehrig’s disease. ALS causes weakness and then paralysis of the limbs and muscles used for speaking, swallowing, and breathing. With no cure, and limited treatment options, ALS is a grim diagnosis. The average life expectancy is 2 to 5 years, with a rapidly declining quality of life. Only 1 in 20 people with ALS will live more than a decade as did Stephen Hawking.

In Closing

Please make any contribution you can to help with the financial burden, so that Steve can face ALS and 2024 knowing he can pay his medical bills, access insurance, medications, and clinical trials, and live as independently as possible for as long as possible. We are deeply grateful to GoFundMe, to all who have sent messages of support, and to those of you who are willing and able to donate to Help Steve Fight ALS! Steve aims to defy the odds and take on this challenge with everything he's got!