Story
Why
Racing across the country seems crazy, but you’ll do anything to help raise money to save your child. That’s why Brett Stelmaszek is taking on the challenge, to raise money for his three-year-old son, Emmitt, who suffers from a rare genetic disease called SynGAP1. The disease means Emmitt can’t speak, requires round-the-clock care, and has suffered from medication-resistant seizures since he was six months old. But there is hope. Researchers are working on a slew of medicines and therapies to restore the SynGAP protein that Emmitt and hundreds of other children are missing as a result of this genetic disease.
The Cannonball Run Challenge is a route from Red Ball Garage in New York City, NY to the Portofino Hotel in Redondo Beach, CA. The vehicle used will be Brett’s Tesla Model X. The trip is estimated to span nearly 2,900 miles and take close to 60 hours combined driving and charging times. Though the crew will not be vying for a record-setting time, they will incorporate their passion for all things tech and amusing antics that they’ve come to be known for. In addition, the stream will feature giveaways from corporate sponsors including a top of the line gaming PC. A trip across the country in the Model X symbolizes the growing number of SYNGAP1 patients across both the USA (227) and the world (808), and the community’s certainty that new technologies will result in a cure. Furthermore, caring for a loved one affected by SynGAP1 is a non-stop feat of endurance, much like the Cannonball Run Challenge.
Where Your Money Is Going
Donations made by viewers and sponsors will help fund FUNCTION: a collaborative Drug Discovery Project in partnership with RareBase, PBC which SRF has pledged $150,000 to support.
Syngap Research Fund is partnering with Rarebase, a public benefit biotechnology company, who recently launched a tech-enabled drug discovery platform called Function. Function's 15 patient organization anchor partners (Syngap Research Fund, ADNP Kids Foundation, FOXG1 Research Foundation, STXBP1 Research Foundation, etc.) represent genes that cause epilepsy, autism, developmental delay and neurodegeneration. Simply put, Rarebase's proprietary drug discovery platform will take healthy human cells and screen against all FDA approved small molecule drugs, plus a proprietary library of small molecules selected for their relevance to SYNGAP1 and the other central nervous system conditions participating in Function.
Because SYNGAP1 is caused by a deficiency of the SynGAP protein, critical to proper brain function and development, the goal of this screen is to identify drugs that can upregulate (overproduce) gene expression of the SynGAP protein, compensating for our children's non-functioning copy of the gene.
There are many paths to treatment; while we are pursuing novel gene therapies (ASOs, AAVs) that will take more time, safety testing, FDA approvals, etc. - the next logical thing to do is to simultaneously screen all existing drugs, in hopes that a medication that is already FDA approved may be repurposed for SYNGAP1. These drugs have already been determined safe, and if identified, such a treatment could significantly improve the quality of life for our children!
Giveaways
There will be giveaways for the stream. There are multiple ways of entering the raffle for the giveaway. Every $5 donated towards SRF through the JustGiving campaign will result in 1 raffle ticket (ie $10 = 2 tickets, $50 = 10 tickets, $69 = 13 tickets). Additionally, 1 raffle ticket can be earned for every hour of the stream watched on Twitch. There will also be one selected winner from social media users. You can find out more at: https://bit.ly/3i9XjLn
Entry into the raffle will end at 11:59:59PM Wednesday, October 13th 2021. Winners will be randomly drawn on Monday, October 18th.
1 Prize per entrant.
Winners will have 48 hours to respond once they are notified of their winning.
Prizes
Prizes are available to US residents ONLY unless otherwise stated. Void where prohibited. No purchase necessary.
1x Custom UFD Tech PC valued at over $3,500 - https://youtu.be/B8elfpx4q5Y
Inteli9-11900K, ASRock Z590 OC Formula, 32GB Crucial Ballistix DDR4-3200 RAM, 1TB Sabrent Rocket 4 Plus NVME 4.0 SSD, & ASRock RX 6900 XT OC Formula
1x iBUYPOWER Revolt 3 Custom PC valued at $2,500. - https://www.ibuypower.com/hyte
1x Wootware Wootbook w/ Ryzen 9 5900HX, 32GB RAM, 2TB NVME SSD, & RTX 3070 valued at over $2,000. https://bit.ly/3zyfTmd
1x Custom UFD Tech PC w/ i7-10700KF, 16GB RAM, 1TB NVME 3.0 SSD, & RTX 3070 valued at over $2,000 - https://www.twitch.tv/videos/1163033846
1x EVGA RTX 3080 w/ Hybrid Cooler Kit courtesy of Asetek valued at over $900.
2x XFX RX 580 8GB Graphics Cards valued at over $200 each.
Social Media Giveaway Prize
1x Custom UFD Tech PC w/ Ryzen 7 5800X, 16GB RAM, 1TB NVME 4.0 SSD, & RTX 3070 Ti valued at over $2,000 - https://www.twitch.tv/videos/1164896584
1x Custom UFD Tech PC w/ Intel i7-11700K, 16GB RAM, 1TB NVME 4.0 SSD, & RTX 3060 - https://www.twitch.tv/videos/1163924196
Where to Watch
Twitch: https://www.twitch.tv/ufdisciple
YouTube: https://www.youtube.com/UFDTech or https://www.youtube.com/HotNewsUFD
FB: https://www.facebook.com/UFDTech
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