Allow me to bid you a warm welcome to my ALS fundraising page for the 2022 Napa Valley Ride to Defeat ALS and Walk. This is the 18th anniversary of this signature event nationwide for raising funds and awareness to battle Amyotrophic Lateral Sclerosis, a devastating, progressive neurodegenerative disease. This is my 9th year participating in the ride, and my 3rd year as its co-chair. I continue to be extremely passionate in my commitment to create a world wthout ALS.
Please contribute today by clicking on the 'DONATE NOW' button on the top right hand side of this page. If you prefer to mail in a check, click on the link at the bottom for instructions. Thanks so much for whatever amount you can give.
Through the community’s outpouring of support for Golden West Chapter ALSA Team Challenge events, here are just a few examples of how recent significant progress has been made in the fight against ALS:
• In 2021 Amylyx Pharmaceuticals successfully began phase 3 clinical trials on a promising new therapeutic. AMX0035 showed impressive results in terms of slowing disease progression as well as establishing that the treatment is safe. After six months of treatment, it demonstrated a significant benefit compared to placebo, delaying the fast-acting neurodegenerative disease by supporting the inner workings of the brain’s neurons.
• In 2021, Ionis Pharmaceuticals announced a pivotal patient trial of antisense therapy (ASO) following aggressive joint research efforts with The ALS Association and Project ALS. Their Phase 3 clinical trial of ION363 (aka jacifusen), targets patients with a mutation in the fused in sarcoma (FUS) gene, a rare and aggressive form of ALS.
• In 2021, Biogen shared topline results from the tofersen VALOR Phase 3 study focused on people carrying the SOD1-gene mutation. The results from the VALOR study are encouraging as they show signs of slowing disease progression in people with SOD1-ALS relating to important aspects of their daily lives.
• In 2017, the FDA approved Radicava™ (Edaravone), the first new treatment specifically for ALS in 22 years. In clinical trials, some ALS patients receiving Radicava showed significantly less decline in physical function versus those receiving placebo. Click here for more details about this promising new drug: http://web.alsa.org/site/PageNavigator/alsa_radicava_faq.html. The only other approved treatment specifically for ALS, riluzole, was approved in 1995. This is a huge step forward for people with ALS.
• Scientists have identified a previously unknown function of a protein called TDP-43. The study’s findings suggest that, when TDP-43 is clumped together (seen in most people with ALS), it causes cells to function abnormally. Not only did these researchers identify how this appears to negatively impact cells, but also found a way to produce healthy ones by replacing it with another genetically-modified protein.
To learn more about the impact of ALS research during the past year, go to www.napavalleyride.com; click on 'About Us' on the main menu and then click on 'where the money goes.'
There is much more work to do to find better treatments and ultimately a cure while improving the quality of care for those suffering from this progressive neurodegenerative disorder. Thanks again for your support as we strive to achieve the pre-pandemic fundraising level for the Napa Ride of $1 million or more.
Co-Chair, Napa Valley Ride to Defeat ALS & Walk
Golden West Chapter
The ALS Association
Mobile: (510) 612 0420