September 2020
#WeCan'tWait
This year, we need your help more than ever before. We've never been closer to a cure and you are our #1 hope. Make it happen here.
The ALS Association and I AM ALS have launched a petition calling on the FDA and Amylyx Pharmaceuticals to bring AMX0035, a promising new drug developed by Amylyx, to market as soon as possible. Phase 2 testing of AMX0035 showed the drug slowed the progression of ALS. The petition asks that FDA agree to forego a phase 3 trial and instead, require rigorous follow-on testing as the drug is made broadly available to people living with the disease at the earliest possible opportunity. The results of its AMX0035 phase 2 trial were published on Wednesday in the New England Journal of Medicine.
2020 Walk to Defeat ALS®
Dear Friends,
 
The purpose of the Walk to Defeat ALS® has always been to raise the bar on spreading ALS awareness while also supporting the mission-critical programs and services offered by the Greater Sacramento Chapter. Our team takes great pride in planning, engaging the ALS community, and executing our annual signature event. This year, due to COVID-19, we are facing unparalleled challenges that have forced us to once again reimagine the Walk to Defeat ALS®.

The health and safety of our community is paramount and—as such—the Cruise to Defeat ALS concept was born. However, after much back and forth with the City of West Sacramento, it has become evident that gatherings of more than 100 people, regardless of whether attendees are safely social distancing, will not be permitted in October.

But ALS doesn’t stop and neither do we. In place of the Cruise to Defeat, we are charging forward with the Walk Your Way movement. We will ensure that every one of you have the tools to Walk in a way that fulfills your personal commitment to a world without ALS. Whether that means organizing a mini Walk in your community, decorating your car or home, or leading your own neighborhood car cruise, we are here to help you spread awareness far and wide.

Over the next week, we will be reaching out to each Walk team captain to create a plan to bring the Walk to your neighborhood. We will support you every step of the way and promise to leave you fulfilled in your commitment to the ALS community.

We are closer than ever to our vision of a world without ALS and your commitment to the Greater Sacramento Walk to Defeat will get us there!

Together for a cure,
Amy Sugimoto
Executive Director
The Greater Sacramento Chapter of The ALS Association announces their endorsement of Proposition 14 the Californians for Stem Cell Research, Treatments and Cures Initiative of 2020 – that will appear on the November ballot in California. The Greater Sacramento Chapter joins with a broad coalition of dedicated patient advocates, families facing ALS, Nobel Prize winners, and respected medical professionals and scientists in supporting this proposition.

Proposition 14 will renew funding for the continued advancement of treatments and cures that could improve the lives of millions living with chronic diseases and conditions, including ALS. The Initiative would authorize $5.5 billion in state general obligation bonds to fund the development of vital treatments and cures, and it will also help stimulate the state’s economy in the wake of the COVID-19 pandemic. To learn more about the details of the initiative, please visit YESon14.com

People with ALS and their caregivers face a substantial burden accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and debt for the ALS community. These barriers to accessing insurance lead to financial burdens that demand attention in our community.

The findings come from the first ever ALS Focus survey, which The ALS Association and its partners conducted earlier this year, focusing on “understanding the insurance needs and financial burden” of people with ALS

We recently talked with Dr. Gerbino from the Maniatis Lab at Columbia University to learn about her unique research project focused on identifying how mutations in TBK1, one of the genes associated with ALS, differentially affect the cells of the spinal cord involved in the pathogenesis of ALS.

We interviewed Dr. Paul McKeever from the Rogaeva lab at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto. Paul’s current research project is focused on uncovering the molecular programming which make individual brain cells and populations of cells susceptible or resilient to the disease process so that new therapeutic avenues can be developed for patients with ALS and FTD.
Thank you to our national sponsors!
Thank you to our local sponsors!