Welcome to the page of
Aaron Bortel
Personal Amount Raised
$21,101.52
Personal fundraising goal: $20,000.00
Achievements
Self Donor
$150
$750
$3,000
$7,500
$10,000
$25000
$50000
Help us Cure ALS! Napa Ride in 6 Days!
Hello and welcome to my ALS fundraising page for the 2024 Napa Valley Ride, Walk & Roll to Cure ALS. This is the 20th Anniversary of our Ride, and it has become the single largest one day fundraising event in the nation to defeat ALS.
ALS (Amyotrophic Lateral Sclerosis) is a devastating, progressive neurodegenerative disease. Upon diagnosis, those with ALS will die on average within 2-5 years. Our goal is to raise funds to change these numbers and create a world without ALS.
Please help us today by clicking on the 'DONATE' button at the top of this page.
My connection to ALS is my lifelong friend Miles McConnell. Miles has been living with ALS for about 10 years and we've watched him continue to lose his physical strength. He now spends his days in a wheel chair and communicates by typing instead of talking. The nerves in his body had deteriorated and no longer can he do what most of us take for granted. No walking, no driving, no talking. Actually he grunts out some words that very few can understand.
While Miles has lost many physical functions, he remains the brilliant creative person that I met at the age of 5. He has dedicated his life to helping find a Cure for ALS and despite his inability to move his body, he works tirelessly to raise awareness of this disease. He understands how lucky he is to be one of the 10 percent diagnosed with ALS to make it to 10 years. He's been co-chair of the ALS Network (Formerly Golden West) Napa Valley Ride for many years and continues to attend meetings, awareness events, and work on the logistics of the Ride.
I joined Miles on the Ride Committee a number of years ago and have been raising funds and promoting the Napa Ride event to help Find a Cure for ALS. I attend multiple committee meetings each month and promote our ride at different events throughout the year. At our Napa Ride we've been riding as Team (s)Miles and last year our team raised over $125,000, while the event itself raised over One Million Dollars. We hope you will either ride with us and or help by donating to find a Cure.
Your past and future donations are making a difference toward Ending ALS. Here is an example 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% redution in plasma neurofilament light (Nfl), a protein released from damaged neurons, compared to a 12% increase in placedo-treated participants. Elevated levels of Nfl are used a a marker to indicate neurodegeneration ad 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.
Please help us today by clicking on the 'DONATE' button on the top right hand side of this page.
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. Thank you for your support as we strive to help those who need our help.
We ride together,
-Aaron
224th Overall
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45th On Team
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0 | 0 | $21,101 |
Points | Activities | Amount Raised |
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