A Husky for Life, In the Fight of His Life, Partners with UW to Advance ALS Research
Phil Green knows what it means to be a part of something bigger than himself. Long before he became an amateur expert in muscle biology, stem cells, and neurodegenerative diseases, he was a student athlete – an undaunted walk-on few may remember on a team nobody will ever forget. As a backup kicker and safety during the storied Don James era, Green learned to make the most of small roles, contributing any way he could to shared achievements, including a national championship in 1991.
Of course, the glory days were about much more than football. The brotherhood Green formed with his teammates, and the resilience instilled in him by Coach James, would equip him for the greatest battle of his life.
After college, and an attempt at a professional soccer career, Green built a career in technology and eventually started a family. He and his wife Jennifer are raising four children, now ages nine to seventeen, in Temecula, California. Life changed in early 2017. That’s when Green began feeling twitching – an unexplained sensation that began in his triceps and spread to other limbs. Six months later, following a battery of tests, MRI’s, EMG’s and meetings with specialists, he received life-changing news. He had ALS.
Joining the Fight
Amyotrophic lateral sclerosis (ALS) is an incurable progressive neurodegenerative disease. For reasons that are not well understood, the motor neurons that allow the brain to communicate with muscles throughout the body begin to die. People with ALS experience devastating loss of muscle control, beginning with fine motor skills, and ultimately, the inability to walk, talk, swallow, and breath. Currently, an estimated 20,000 Americans are living with ALS. Of these cases, 90% occur without any family history.
At the time, Green didn’t know anybody with ALS or very much about the disease itself. But the values forged during his UW Football career were still encoded in his DNA. He was ready to tackle the disease and fight ALS with all of his might.
Green soon found a kindred spirit in Steve Gleason, a Washington State University alum who played six seasons with the New Orleans Saints. Together, Green and Gleason, the Husky and Cougar bound by adversity, are putting a new spin on the cross-state rivalry. They are the driving force behind the Boeing Apple Cup Series ALS Challenge, a competition to see which school can raise the most money for ALS before the 2019 Apple Cup. Phil has been recently been voted onto Team Gleason’s Board of Directors.
Energized, Green sought other opportunities to make an impact through teamwork. As part of the patient-led organization I AM ALS, he led a successful effort to create the Federal ALS Caucus, and enlisted his Congressman, Rep. Ken Calvert, to become one of the first founding co-chairs to lead a team of ALS champions in the U.S. House of Representatives. He has met with the acting FDA Commissioner on designing more effective and patient-friendly ALS clinical trials. And he participated as a patient reviewer for the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP), which will fund $10 million in ALS research this year.
“Part of what I do on a daily basis is build bridges within the ALS community,” says Green. “My goal is to bring together organizations to talk to each other. The organization someone represents is not what really matters. All I care about is making progress in the ALS space. We need everyone collaborating to elevate everybody.”
One engine of progress in the ALS space is Augie Nieto, the founder of Life Fitness, who was diagnosed with the disease in 2005. For Green, Nieto is a role model and a partner in patient advocacy. Green helped plan a September golf tournament, which UW Medicine helped to sponsor, to benefit Auggie’s Quest, the organization Nieto formed to raise money for ALS research. Phil serves on the Leadership Council for Augie’s Quest.
Green is also actively involved with ALS Therapy Development Institute (TDI), a private, nonprofit biotech based in Cambridge, Massachusetts, that Nieto helps lead as Chairman of the Board. Green is part of the Precision Medicine Program, which creates immense of data on ALS patients, including voice analysis by Google, activity tracking using accelerometers, full genome sequencing, and the use of stem cells as tools of discovery. TDI is collecting tissue samples from ALS patients to create lines of induced pluripotent stem cells (iPSCs), which, in turn, will allow researchers to rapidly screen thousands of potential drugs.
Accelerating Research at UW
Since his diagnosis, Green had been drawing on a sense of service he learned decades before on the football field. It was a call from David Mack PhD, a faculty member at the Institute for Stem Cell and Regenerative Medicine (ISCRM), that would close the circle. Mack, who is part of an interdisciplinary team leading the new Center for Translational Muscle Research (CTMR) at UW Medicine, thought Green might like to know that his beloved alma mater was about to join the battle against ALS.
“That was fantastic news,” Green recalls. “They are bringing fresh eyes to the problem and using their expertise to consider new solutions to solve the ALS puzzle. They are leveraging their experience in muscle biology and bioengineering in a collective way to try creative approaches, like muscle systems on a chip.”
UW Medicine researchers are using the NIH-funded muscle center to investigate a wide range of muscle disorders, including ALS. The center will be a world leader in growing human stem cells into skeletal and cardiac muscle tissue, creating disease-in-a-dish models to expand knowledge about how muscle diseases begin and to accelerate the effort to develop therapies for patients.
One use of stem cells that excites Green relates to the heterogeneity of ALS. By studying cells from a broad set of patients, he is hopeful researchers will be able to better identify and understand different subtypes of the disease, perhaps improving how individuals are diagnosed and treated. In general, Green sees stem cells as a pathway to a brighter future for the ALS community. “I think stem cells are going to help us accelerate research. The exciting thing to me is we can use stem cells to recreate the neuromuscular system in a dish, then we’ll be able to identify potential therapies.”
Right now, in fact, Green is participating in a stem cell therapy clinical trial at the University of California Irvine – just another way the he is helping to push the field of ALS forward. Through it all, the devoted Husky remains committed to the team goal. “I bleed purple,” says Green. “So if I can help elevate UW Medicine’s research and help people recognize UW as a player in the ALS community, I’ll do whatever I can.”
For David Mack, patient advocacy is a vital catalyst for medical research. “Phil’s energy and support is absolutely essential,” says Mack. “Having a champion like Phil is the best way possible to help the world understand the real urgency behind our research. The reminder that there are patients waiting for new treatments to ALS and so many other muscle diseases is extraordinary motivation for us as investigators. We’re all in – and with good reason.”
For more on Phil Green and the Center for Translational Muscle Research at UW Medicine, watch this short video