ALS Treatment Support

This fundraiser is for my brother Nick.

For those who don't know, Nick was diagnosed with Amyotrophic Lateral Sclerosis (ALS) about three years ago.

As many do know, he is no stranger to taking on immense challenges and overcoming them. Over the past few years, he has moved around the world for the lifestyle, people and work he loves, which has landed him in Geneva, Switzerland. He is now a permanent resident there, fluent in a second language, excelling in his career, and the owner of a mountain home in the place on earth that fills his soul. High in these mountains, he runs. Through the years, his feet have carried him thousands of miles over the Colorado Rockies, the Sierra Mountains, the Nepali Himalayas, the Atlas Mountains, and the French, Italian and Swiss Alps.

Almost a year ago, Nick completed a sixty-three-mile, high mountain ultramarathon called the CCC, which abuts the Mont Blanc range. Imagine running a marathon. Then imagine running two. Then imagine adding almost another half marathon and doing this all at once, on trails, through the night, with no sleep, where the oxygen is thin, across twenty thousand feet of elevation gain. The most surreal sights eyes can see and personal fulfillment being the reward. Now imagine doing that with the significant onset of ALS symptoms. When Nick completed the CCC, he had lost significant strength in his arms, some fine motor ability in his legs, and energy levels consistent with the neuropathy.

Behind his kind eyes and humble presence is a fiercely determined, focused and mentally tough man who approaches this diagnosis with the same positive attitude he applies to the other mountains in his life. Currently, Nick is working with some of the world’s finest medical, health and wellness specialists, both mainstream and alternative, taking a holistic approach to his condition. Though Nick is a loving part of countless people’s lives, he has embraced his challenge with the understanding that we are all a small part of existence. Therefore, his approach is not one to seek attention and sympathy but selflessly sees his situation as an opportunity to acquire new knowledge about ALS, while offering himself up to alternative possibilities that may contribute to the greater puzzle of treatment.

An ALS prognosis is a difficult one for anyone to embrace.

The average life expectancy from diagnosis is three to five years, with rapidly deteriorating motor neurons causing severe muscle atrophy, loss of speech, compromised ability to eat without intervention and ultimately death due to severely compromised ability to breathe without assistance. Aside from two minimally effective drugs (Riluzole and Edaravone), there are no treatments for this disease. Many clinical trials and studies are happening, but the most significant challenge faced in finding new treatments and therapies, outside of getting them approved by governmental organizations, is the speed at which the disease progresses. Oftentimes trial participants do not survive long enough to signal meaningful data on the efficacy of treatments.

This is why we are here.

This fundraiser intends to raise awareness about the ALS condition, the treatments and lifestyles surrounding it, and to engage alternative approaches so that Nick can contribute his experience and learnings toward possible viable therapies and, with any luck, benefit from them.

With your help, Nick can pursue the following alternatives and studies, which are not supported by insurance.

Our family thanks you sincerely for your time and support, and if nothing else, for your love.