2020 has been a year unlike any other. Facing a global pandemic, economic uncertainty, and the realities of lockdowns, quarantines, and social distancing, the ALS community still found many creative ways to stay strong and united, even from afar. The support of this community has been incredibly important to keeping our research to end Amyotrophic Lateral Sclerosis (ALS) at the ALS Therapy Development Institute (ALS TDI) going, despite the many challenges we’ve all faced this year.
As part of this year’s ALS TDI Summit, a free conference about ALS TDI’s latest research, we will be recognizing a few community members, nominated by their peers, whose efforts truly stood out this year. While there are countless individuals – including people living with ALS, their families and caregivers, researchers, and supporters – who did so much to help us get through this year, these three truly went above and beyond to help empower the community and support the fight to end ALS.
Phil Green and Sandy Morris: Stephen Heywood Patients Today Award
The Stephen Heywood Patients Today Award is presented to a person with ALS who has been an exemplary community advocate for ALS research and awareness. They are knowledgeable of current research, willing to inform the community about research trends and advancements, and eager to serve as an educator for those unfamiliar with ALS.
This year the award is being awarded to two particularly deserving community members – Phil Green and Sandy Morris.
Phil Green is a former University of Washington football player and father of four who was diagnosed with ALS in 2018. Since his diagnosis, he has been relentless in spreading awareness about the disease and supporting research to end it – as an advocate and a participant. Earlier this year he lent his voice to a campaign to support ALS TDI’s Precisions Medicine Program – in which he is himself enrolled – helping us to continue to learn about ALS from people with ALS. He also participated in Brainstorm’s NurOwn trial, served as an ALS Association roundtable member, and has participated in many biotech and pharmaceutical industry advisory panels. Phil has also joined the International Symposium on ALS/MND through the Patient Fellows Program.
Sandy Morris, a mother of three who was also diagnosed with ALS in 2018, has brought a similar determination to advance and support ALS research to her fight against the disease. She has been active in creating resources to help people living with ALS get the help they need with I AM ALS, working with Biotech and Pharma companies to make sure they listen to patients voices when they design clinical trial protocols and has made many trips to Washington D.C. to educate members of Congress about ALS. She herself has also participated in the Brainstorm trial, as well as traveling to South Korea to participate in the Corestem stem cell trial.
Together, Phil and Sandy are the co-chairs of I AM ALS’ Clinical Trial Committee, which has successfully lobbied the FDA to update their guidance document for ALS Clinical Trials, created a standardized, 5-star rating system for Patient-Centric Clinical Trial Design, and organized an “ALS Caucus” of representatives and senators in Washington to push forward legislation supporting people living with ALS, among many other accomplishments. They both regularly attend the ALS Town Halls hosted by ALS TDI.
Bryan Wayne Galentine: The Interconnected Award
Specially named for this unprecedented year, the ALS TDI Interconnected Award is presented to a member of the ALS community who has demonstrated an unwavering commitment to keeping the community educated and engaged throughout the COVID-19 pandemic.
Bryan Wayne Galentine will, sadly, be presented with the award posthumously. He passed from complications due to ALS on October 22nd at the age of 53. Bryan was a singer-songwriter living in Tennessee, who was diagnosed with ALS in 2017. Throughout the years following his diagnosis, Bryan spearheaded a number of projects to bring the ALS community together.
His “What’s your Omelet” mantra encouraged people to live in the moment. This mantra was based on his determination, after receiving his ALS diagnosis, to accomplish something simple he had always wanted to do – learning how to make an omelet.
“It could be big bucket list stuff like skydiving or climbing Mt. Everest on down to learning how to play guitar, speak French or paint,” he wrote in a Facebook post describing his philosophy. “In my case, it was learning how to make an omelet. Get it? The point is- life is short, quit putting things off, don't wait just do it! So – What's YOUR Omelet??”
Bryan raised money and awareness for ALS by selling T-shirts and other merchandise with this slogan, as well as with the sales of his album While You Wait, which he wrote and produced with many of his friends in the Nashville songwriting community. He was an advisory board member of I AM ALS, and was also instrumental in the campaign to establish an annual Major League Baseball event celebrating Lou Gehrig, Lou Gehrig Day. In early November, a few weeks after his passing, it was announced that the initiative had the support of all 30 MLB teams.
To see these awards presented and hear from the Leadership Award Winners, register for the ALS TDI Summit, which will take place Friday, December 4th, from 1:00pm-4:00pm EST.