Lily Xia's Colleagues at EverythingALS
Lily Xia's Contact Details
N/A
Portland, Oregon, United States
EverythingALS
Lily Xia's Company Details
EverythingALS is a patient-focused non-profit bringing technological innovations and data science to support efforts, from care to cure, for people with ALS. We focus on bringing the ALS community knowledge, open data research and funding for the startups, to accelerate treatments for ALS.EverythingALS is a brand of Peter Cohen Foundation, 501(c)(3) founded in 2020 by a group of individuals who have lost loved ones to ALS. We launched in April 2020 and have accomplished a lot in under a year. We have built an active growing community of ALS patients and caregivers, collaborated with the leading minds at eminent research institutions, launched a crowd bill payment platform, and obtained an IRB to conduct our own Voice Project research into ALS disease progression. This will be the largest voice study in ALS with 1,000 participants. Our study is driven by the need for early detection and prognosis of ALS. As volunteers, our primary motivation is impact rather than financial return.EverythingALS brings renowned ALS researchers and people with ALS together in a bi-monthly live presentation where patients get answers to their questions directly from the leading scientific minds on ALS. Discussions involve clinical trials, research knowhow, ALS disease management, physical symptoms, psychological symptoms, social issues, spiritual questions, practical needs, end of life and death management, and the grief process for both patient and surviving family. This March, EverythingALS launched the first ever Tackle ALS Kaggle Data Challenge along with Answer ALS and Roche Canada's Artificial Intelligence Center of Excellence. We are requesting the collaborative effort of the AI community to participate. The challenge presents a curated collection of clinical and biological datasets that need to be analyzed. this data, increase our understanding of ALS, and bring clarity to potential therapeutic targets.We won't stop until there is a cure for ALS!