Dear Friend,

Allow me to bid you a warm welcome to my ALS fundraising page for the 2023 Napa Valley Ride to Defeat ALS and Walk. This is the 19th anniversary of this signature event nationwide for raising funds and awareness to battle Amyotrophic Lateral Sclerosis, a devastating, progressive neurodegenerative disease. This is my 10th year participating in the ride, and my 4th year as its Co-Chair. I continue to be extremely passionate in my commitment to create a world without ALS.

Please contribute today by clicking on the 'DONATE' button on the top right hand side of this page. If you prefer to mail in a check, click on the link for the "printable donation form" below. Thanks so much for whatever amount you can give.

Through the community’s outpouring of support for Golden West Chapter endurance events, here are just a few examples of how recent significant progress has been made in the fight against ALS:

• In April, the US Food and Drug Administration (FDA) approved Qalsody (Tofersen) as a therapy for the treatment of people with familial or genetic ALS with a mutation of the gene SOD1-ALS, a rarer form of the disease. It is the first time that reference to a biomarker, Neurofilament, tied to ALS has been noted in the approval process. In trials, Qalsody-treated participants experienced a 55% reduction in plasma neurofilament light (Nfl), a protein released from damaged neurons, compared to a 12% increase in placebo-treated participants. Elevated levels of Nfl are used as a marker to indicated neurodegeneration and the Qalsody results indicate notable hope for patients with the SOD1 gene.

The Golden West Chapter is proud to have played a role in Qalsody’s journey as the first FDA approved treatment to target a genetic cause of ALS. The ALS Association was an early investor in the antisense technology that powers tofersen; Chapter constituents participated in the clinical trials at clinics funded by the Chapter; and Chapter advocates lobbied for swift approval and access for the treatment. This historic milestone represents notable progress, and will have a lasting, positive impact in the ongoing development of new and better treatments for all forms of ALS. 

• On 9/29/2022, the FDA announced that it approved AMX0035, now called RELYVRIO, as a new treatment for ALS. A study published in the New England Journal of Medicine in 2020 showed that AMX0035 is safe and effective at treating ALS. Last year, AMX0035 trial investigators reported long-term results showing that it can slow disease progression, extend life by 10 months, and reduce the risk of hospitalization. 

• 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. 

• 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 napavalleyride.org; 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 cures while improving the quality of care for those suffering from this progressive neurodegenerative disorder. Thanks again for your support as we strive to raise this year's important goal of $1.2M or more.

Most sincerely,

Bruce

Bruce Friedricks

Board Member, Golden West Chapter, ALS Association
Co-Chair, Napa Valley Ride to Defeat ALS & Walk
Oakland, California
Mobile: (510) 612 0420
bfriedricks@gmail.com