Eric Valor - ALS Patient Activist & SRG President
(picture courtesy of San Jose Mercury News)
This is Eric Valor. He is one of 30,000+ people in the US currently trying to survive ALS (Amyotrophic Lateral Sclerosis or "Lou Gehrig's Disease"). Since his diagnosis, ALS has taken a very heavy toll on him and his family; a toll that is personal, financial, and emotional. Even though Eric gradually became quadriplegic, losing all personal independence, and is now being kept alive only through the use of a mechanical ventilator, his mind has stayed sharp.
Instead of giving up, Eric decided to fight ALS. Though he is past his last natural breath, he took control of his situation. Through the use of a computer system which tracks the movement of his right eye (very similar to the technology used by another well known ALS patient - Stephen Hawking), he used the Internet to train himself in neuroscience then built a coalition of fellow patient activists and biotech entrepreneurs. Along with partners Ryan Bethencourt, Andrew Gengos, and Joseph Jackson, Eric founded SciOpen Research Group. SRG is a non-profit biotech with the sole purpose of developing J147 and other therapeutics for ALS, an orphan disease which has historically been neglected.
Eric and the SRG team created this crowdfunding campaign to fund the histopathology (microscopic tissue examination) lab work needed to better analyze the results of our already-ongoing study at the Salk Institute. Through this work, which will be published in a public Open-Access journal, SRG can bring J147 closer to the clinic for ALS patients.
This is SciOpen Research Group
6000 Americans Die From ALS Every Year
Amyotrophic Lateral Sclerosis (aka ALS or "Lou Gehrig's Disease") is the most horrible neurodegenerative condition possible. It strikes in the prime of life, robbing the person of movement while keeping the mind sharp and all too aware of the prison of their increasingly-inert bodies. Because 90% of those afflicted die within two to five years of diagnosis, the number of patients living at any single moment is relatively low. Therefore, big pharmaceutical companies have deemed it unprofitable and research to bring treatments into the clinic has lagged. Lag equals lost lives.
Because ALS frequently hits in the prime of life, it creates a severe economic drag in terms of lost productivity. This extends beyond the patient to the family, bankrupting savings and destroying careers as they try to care for their loved one.
With the explosion in technology, advanced scientific tools are now available to citizen scientists. This has led to the formation of "hacker" biolabs and the emergence of a movement called "guerrilla biotech". SciOpen Research Group is the first fully operational guerrilla biotech. We are dedicated to doing the difficult science that for-profit pharmaceutical companies find too "risky". We can do novel and creative scientific experiments necessary to bring basic research discoveries, bridging the "Valley of Death" between lab bench to patient bedside. And we make the results of our work available to the public, not hidden behind paywalls.
There is of course risk. This is science. The SOD1 ALS mouse testing is currently ongoing and there is no guarantee that J147 will succeed in significantly prolonging the lives of those mice. However, as outlined in a recent publication on J147, we believe the data is promising. We would appreciate any help you can provide through donations, spreading the word to others who can help support the campaign, or providing other publicity for this campaign.
Why SciOpen Research Group Is Important
What Is SRG's Plan?
SciOpen Research Group needs your help! Our experiment is already underway. We will generate good data for sure. But to generate GREAT data, we need to do microscopic tissue examination. Help us bring this project home. Together we can change the research landscape and provide hope for those afflicted with ALS.