{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"It is a beautiful story of how the people, in the end, are going to find the cure to their own disease","description":"There is a paradigm shift underway in how nonprofits are advocating for and with people diagnosed with shattering neurogenerative conditions. It starts with treating patients as experts, identifying their priorities for research and leveraging their abilities to forge powerful relationships in Congress, with federal agencies and at all decision-making tables. I AM ALS, a nonprofit founded by Brian and Sandra Wallach after Brian\u2019s diagnosis at age 37, is reinventing the playbook for how to approach finding a cure and treatment for a condition that is both devastating and 100% fatal. Brian and Sandra, who met on the Obama presidential campaign trail, are applying their experience with political organizing and mobilization to the eradication of this disease. In this episode of Power Station I speak with Andrea Goodman, the exceptional CEO of I AM ALS, about how a patient-centered organization is achieving robust investments in medical research by Congress and greater cross-pollination of ideas and resources among previously siloed scientific institutions. Andrea views herself as a facilitator of the people, organizations, and institutions whose expertise, resources and compassion are critical to delivering a cure. We can learn so much from the sea-change that I AM ALS is leading.   ","author_name":"Power Station","author_url":"https:\/\/powerstation.live\/","html":"