Empowering the ALS Community Through Shared Experience
We are a patient-led initiative providing a gathering place for connection, resources, and advocacy. Built by those who live the journey.
Our Story
als.COMMUNITY was founded to honor Shelbie Oppenheimer, who spent twenty years living with ALS before passing in 2025. Inspired by her 1999 testimony before the U.S. Senate — where she called for families to be truly seen and understood — her legacy became the foundation for the "ALS Town Square" she dreamed of: a place where no one faces this disease alone.
That vision grew from a frustration familiar to anyone who has lived it. When ALS arrives, the systems meant to help are scattered, fragmented, and rarely built around the people who need them most. A group of community members who knew that experience firsthand came together to change it.
Officially launched in 2025, als.COMMUNITY is the first one-stop digital home for patients, caregivers, and everyone connected to the ALS journey. It's free, patient-led, and built from the ground up by people with lived experience — because that foundation is the only one worth building on.
We're here to connect people, share trusted knowledge, and support life with dignity and meaning beyond the diagnosis. Shelbie's fight continues.
Our Core Values
The guiding principles that shape everything we do.
Patient-Led
We center the lived experience in everything we do. The community is built by and for those intimately familiar with the realities of ALS.
Accessible Support
Resources, guidance, and connections available to everyone, regardless of where they are in their diagnosis or disease journey.
Unified Voice
Amplifying advocacy efforts through our collective strength to demand better care, faster research, and meaningful change.
Our Leadership Team
Patient-led. Purpose-driven. Building something that matters.
Chris Howell
President, Board of Directors
"My life is rooted in love, resilience, and joy—ALS can't take that. With my wife and boys beside me, I'm grateful and unstoppable. I'm proud to be part of als.COMMUNITY: patient-driven, purpose-led, and ready to rewrite the ALS story."
Sarah Nauser
VP, Board of Directors
"Everything in life is not going to go our way and that is okay! Find purpose and meaning in your life the way it is. Gratitude turns what you have into enough. I am grateful to be a part of als.COMMUNITY, and create this space for all to connect and share our uncommon lives together."
Jay Smith
Secretary, Board of Directors
"I was 36 when ALS hit, with two daughters just starting school. I made a promise to myself to fight — to be there as they grew up. Ten years later, I'm still fighting with humor, love, and tequila. I'm grateful to have contributed to this amazing community—we are alone no more."
Rev. Melody Ward
Chaplain, Board of Directors
"I have so much to share that I am learning about me, my body & my relationship with God & the Universe! als.COMMUNITY has opened another pathway and I am ever grateful."
Eric Brunner
Arts & Culture Facilitator, Board of Directors
"ALS changes everything—leaving people lost, isolated, and unsure how to keep living the life they love. Creativity became my lifeline to adapt, connect, and move forward. I want others to find that spark. als.COMMUNITY ensures no one faces ALS alone, showing together we can turn challenge into strength, create, and find purpose."
Jeff Oppenheimer
Founder
"Shelbie and I battled ALS for 20 years. After our fight ended, I thought I was done with ALS. But I guess I just couldn't adjust to civilian life. It was my honor to care for my wife, and now it's my privilege to work for all people with ALS. I'm overwhelmed by impatience. We should've been there yesterday!"
Matt Bellina
Board of Directors
"ALS leaves patients shocked, confused, and unsure of what's next. There's an urgent need for clarity and connection. als.COMMUNITY exists to meet that need—bringing everything together in one place, easing the burden, and helping patients and families move forward with knowledge, strength, and support."
Ben Kessel
Board of Directors
"I am passionate about improving the lives of patients and families diagnosed with ALS and finding a cure for this terrible disease, and I want my kids to live in a world free from this disease."
Brian Wasserman
Board of Directors
"Watching my wife and sister face deadly illnesses left me with a deep sense of helplessness—trying to stay strong while knowing what was coming. In their honor, I feel compelled to take action, to help prevent and ultimately defeat these diseases so others won't have to endure that same powerless feeling."
Dave Greenberg
Board of Directors
"I want to help lighten the load for patients, families, and all who love the ALS patients in their lives. It is a very worthy cause, and I will do whatever I can to help."
Eric Toppy
Board of Directors
"I was blessed to walk with my friend Dave Doran from his ALS diagnosis to his final breath. Dave was selfless and devoted his life to finding a cure for others. He lived with purpose, serving his community with courage, grace, and love."
Hoyt Gong
Board of Directors
"I've seen firsthand how hard it is to access care and community. I'm passionate about making healthcare more inclusive, and als.COMMUNITY reflects that mission—bringing equity, connection, and hope to those facing one of the most complex and challenging diseases."
Jay Canowitz
Board of Directors
"I've seen close friends and family go through ALS and witnessed its impact on them and their loved ones. While I remain hopeful for a cure, my focus now is on helping people affected by ALS live with more comfort and dignity—by easing their burden and improving access to resources that enhance quality of life."
Jeff Cole
Board of Directors
"I'm passionate about making a difference in people's lives, and being part of als.COMMUNITY lets me support a cause that truly resonates with me. Standing with individuals and families facing ALS means joining a community confronting immense challenges—and I'm driven to help be part of the solution."
Mitch Wasserman
Board of Directors
"I've dedicated my career to organizations that help others. The strength of people living with ALS inspires me every day. It's an honor to be part of als.COMMUNITY—a platform where real impact happens and lives are improved through connection, shared purpose, and the power of knowledge."
Robin Canowitz
Board of Directors
"Shortly after my daughter was born, her Godmother—my beloved friend—was diagnosed with ALS. I watched her face the disease with unimaginable strength, while her family carried a heavy burden. By supporting als.COMMUNITY, I honor her legacy and help others find the patient-led support she deserved."
Ready to join a community built by people who get it?
ALS.community is free, patient-led, and built around what matters most to the people living this experience every day.