Dear Friend,

Allow me to bid you a warm welcome to my ALS fundraising page for the 2024 Napa Valley Ride, Walk & Roll to Cure ALS. It is the 20th anniversary of this signature event nationwide for raising funds and awareness to battle Amyotrophic Lateral Sclerosis, a devastating, progressive neurodegenerative disease. This is my 11th year participating in the ride, and my 5th year as event 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 ALS Network endurance events, here are just a few examples of how recent significant progress has been made in the fight against ALS:

• In April 2023, 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 ALS Network is proud to have played a role in Qalsody’s journey as the first FDA approved treatment to target a genetic cause of ALS. Our organization was an early investor in the antisense technology that powers tofersen; ALS Network constituents participated in the clinical trials at clinics funded by the organization; and our 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. 

• 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.

• 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 achieve this year's goal of $1.2M.

Most sincerely,

Bruce

Bruce Friedricks

Board Member, ALS Network 

Co-Chair, Napa Valley Ride, Walk & Roll to Cure ALS

Larkspur, California
Mobile: (510) 612 0420
bfriedricks@gmail.com