35: I AM ALS, with Brian Wallach, J.D., Co-founder and Board Co-chair, Synapticure and Co-founder, I AM ALS, and Sandra Abrevaya, J.D., Co-founder and CEO, Synapticure, Co-founder, I AM ALS
Meet Brian Wallach, J.D. and Sandra Abrevaya, J.D.:
In 2017, Brian Wallach, J.D. learned that he was diagnosed with ALS. He and his wife Sandra Abrevaya, J.D. are dedicating their remaining time together to help ALS patients everywhere. They founded I AM ALS, a non-profit organization that successfully advocated for millions in research through major legislation. Brian and Sandra also launched Synapticure, a care platform for ALS patients, with the backing of GV and other investors. They are on a mission to reshape our understanding and treatment of ALS.
Brian and Sandra are truly inspirational, revealing how a family can go forward with a devastating diagnosis and what two people can accomplish in such a short amount of time.
- Founding I AM ALS. Sandra and Brian founded the non-profit I AM ALS to create policy change. Their advocacy facilitated the passage of Act for ALS, which allocates $100 million annually over five years for research and expands treatment options for patients. I AM ALS also provides a platform for patients and caregivers to get support and share their stories, and for volunteers to take “micro actions” that advocate for patients. (12:32)
- Founding Synapticure. Synapticure provides ALS patients a care coordinator that helps manage the administrative burden of coordinating between the patient’s entire care team. It also facilitates access to cutting-edge and personalized testing and treatment; ALS is a heterogeneous disease with many sub-types that respond differently to targeted therapies. Sandra and Brian founded this company to create the continuity of care they wished they had during their treatment experience. (21:28)
- Power in the Purpose. Brian gets his energy from the knowledge that he and Sandra can change the course of ALS with their advocacy. He is driven partially by necessity, but also the belief that he can make a difference, and potentially save his life and 1000’s of others. (31:00)
This episode is hosted by Gary Bisbee, Ph.D. He is the Founder, Chairman, and CEO of Think Medium