20,000 seizures. That’s how many Brett Stelmaszek’s four year old son has had since last year’s Cannonball for the Cure charity live stream. Driven by this painful reality, Brett and the UFD Tech team are supporting Syngap Research Fund with a second, non-stop race across the country. They hope to surpass last year’s $150,000 in donations to fund the next phase of SRF’s drug discovery research with Rarebase, PBC. It’s possible that already approved FDA drugs exist which can help address the devastating effects of SYNGAP1, a rare, genetic disease. With over 1,000 affected people around the world, targeted treatments can’t come soon enough. Patients can experience medication resistant epilepsy, autism spectrum disorder, physical and intellectual disability, and need lifelong, round-the-clock care. SRF’s work with Rarebase will uncover potential drug candidates.
Cannonball for the Cure 2022 will start once again at the Red Ball Garage in NYC at 9:00am eastern on Friday, October 21st. The crew will chronicle their journey across the country live streaming on multiple platforms including YouTube and Twitch. The drive will end on the 23rd at the Portofino Hotel in LA. Donations will benefit SynGAP Research Fund, which is committed to accelerating science to cure SYNGAP1 and to support families affected by the disease.
The nearly 3,000 mile drive will be hosted by team UFD Tech, Peter, and Kevin, who are also fathers to sons with SYNGAP1. This year’s vehicle will sport another striking wrap thanks to SpeedPro South of Pittsburgh. With faster charging and better battery range, the stream may not take the entire 60 hours which were required in last year’s Model X. However, the difference in charging times will be made up with live competitions and meet ups along the route. Viewers can expect to earn points for giveaways again. If you can’t wait for this year’s event, you can find Cannonball test runs streaming live on Twitch as the team prepares for another momentous Cannonball for the Cure.
Find us again at #UFDcure. An event giving page will be live shortly.
For inquiries about becoming a sponsor of the charity livestream, please contact UFD Media Marketing Manager, Tendai, at email@example.com. Press coverage inquiries can be directed to Sydney at firstname.lastname@example.org. UFD Tech Founder, Brett Stelmaszek, can be reached at email@example.com.
UFD Tech is the flagship YouTube Channel founded by UFD Media. What began as a home hobby in Pretoria, South Africa in 2015 quickly blossomed into a media production company team. Since then, UFD Media have covered technology news and products daily for their viewing audience. In 2019, founder Brett Stelmaszek’s youngest son was diagnosed with SynGAP1 which prompted relocation of UFD Media headquarters back to his home in the USA. Newly established in Pittsburgh, PA, UFD Media continues to deliver relevant and heartfelt tech-centered content while engaging with partners to raise awareness for this rare disease.
SYNGAP1-related intellectual disability (US ICD-10: F78.A1) is a rare genetic disorder caused by variants (normally de novo) on the SYNGAP1 gene. There are nearly 1,100 diagnosed patients known to SRF as of July 2022. This disorder leads to several neurological issues including intellectual disability, epilepsy, autism, sleep disruption, gastro-intestinal and feeding problems, hypotonia (low muscle tone), apraxia (delayed/no speech), impulsivity, aggression & sensory processing challenges. (Vlaskamp 2019, Jimenez-Gomez 2019, Smith-Hicks 2021, Wright 2022, Lyons-Warren 2022). There is over 20 years of research on this gene already (Gamache 2020), and still much more to do.
SRF, incorporated in the US in 2018, is a 501(c)(3) public charity whose mission is to improve the quality of life of SYNGAP1 patients through the research and development of treatments, therapies and support systems. Families created sister organizations for SRF in the UK in 2020 and in Europe (Netherlands) in 2022. Completely parent-led, SRF is the largest non-government funder of SynGAP research having committed over $2.9M in grants. The founders cover all operational costs, allowing 100% of donations to go to research. SRF’s grant program awards one or two-year grants to young investigators, physician residents, and clinicians who are interested in studying SYNGAP1. SRF grants are intended to help researchers explore novel ideas and answer questions related to the clinical aspects, therapies and/or genetic causes of SYNGAP1. SRF is a member of the Personalized Medicine Coalition, COMBINEDbrain, Global Genes Foundation Alliance, the Everylife Foundation Community Congress, Rare Epilepsy Network, and Epilepsy Leadership Council. Visit SyngapResearchFund.org.