Sprint4SynGAP – 28+ Teams on a Mission to Find a Cure for SYNGAP1!

Posted on:

On April 29 & 30, 2023, at least 28 teams participated in the 3rd annual Sprint4Syngap for SynGAP Research Fund (SRF). Teams from around the world were encouraged to hold any type of event, in person or virtual. It could be an actual sprint, a fun run, a slow walk or a simple fundraiser, without all the exertion! The idea is to enjoy family, friends & community while raising money for & awareness of SRF & SYNGAP1.

Sprint 2023 by the Numbers

  • We raised over $243,000, and we’re not done counting yet!
  • We raised over $100,000 more this year than last!
  • See all registered teams here.
  • Watch Lauren’s SYNGAP10 podcast here. (Didn’t she do GREAT filling in for Mike???)

Team Tavilla Does It Again!

For the third straight year, Team Tavilla led the way by raising a whopping $162,000! An estimated 150 people braved some chilly weather to walk and run and support all families impacted by SYNGAP1, including 8 in Massachusetts, some of whom were in attendance. A local Boston news station picked up their story, featuring Myla in their piece. And, if you want to see how they raise so much money every year, watch this webinar! The Tavillas certainly set the bar!

A New Family Provides Inspiration!

Three other teams raised more than $10,000, including Hope for Hadley ($11,500) and Team Rocco ($10,700), but it was Phoebe’s Fight who led this group with $32,500! The following notes were shared by Phoebe’s Dad, Eric Moulton:

“Phoebe was just diagnosed this year, so it was our first year participating in Sprint4Syngap. We had over 75 family, friends, neighbors, and supporters attend our event in DC. We didn’t take a headcount, but the seven dozen donuts we provided were all eaten. Attendees came from DC, Virgina, Maryland, and Pennsylvania to show their support for Phoebe and Sprint. We hosted at a local park and conducted a two mile walk through the neighborhood. Some of our good friends even set-up a lemonade stand at the halfway point. I think everyone had a great time, hosting at a park was definitely a good idea with all the children in attendance. The support has been very emotionally overwhelming for our family. All credit for Phoebe’s Fight is due to Emily being an amazing and driven mom.”

THANK YOU!!!

Thank you to all teams, participants and supporters, and to each donor. The vital scientific work SRF funds makes every team’s contribution significant. Every dollar gets us a little closer to a cure. You all made an impact … you all are helping us change our futures!

This year, we also had a raffle. Andrew Ashline was the winner of an adaptive tricycle provided by Rifton Adaptive Equipment. Thank you, Rifton & congratulations, Andrew! (And Team Andrew raised over $3,200, BTW!)

Community

Community is everything when raising someone with SYNGAP1. It can be family, friends, SRF or, preferably, all of the above. Holding a fundraiser soon after receiving your child’s diagnosis can be daunting to consider, but it is an excellent means to grow your community. Life is a bit easier when we have each other. Congratulations Emily and Eric for holding such a successful event – we are all inspired by your example.

Why Does SRF Raise Funds?

The purpose of SynGAP Research Fund is to improve the lives of families living with SYNGAP1 in many ways, including trying to find a cure. As the future cannot be predicted, multiple research avenues must be pursued to help improve the possibilities of a successful treatment. The rare disease and scientific community are discussing SYNGAP1 more and more. This discussion increases the interest in pursuing a cure as well as requests for grant money. SRF must raise funds all year long so we don’t miss out on any prime chance to find that cure and change lives for our Syngap families.

What’s Next?

Sprint4Syngap has become our flagship event and is a great way to kick off the SRF fundraising calendar. Each year, new and exciting events are added to our agenda to raise funds for research. The expanding SRF community has plans for 2023 to provide even more opportunities to surpass the $2M total amount raised in 2022. Here are a few:

Interested in holding your own event? Here are some ideas, or you can email Peter Halliburton:  peter@curesyngap1.org

Save the Date

Sprint4Syngap 2024 is scheduled for Saturday, April 27, 2024. Get it in your calendar now, and start making plans. 2023 was a huge year and may seem unbeatable, but together, we can make next year’s Sprint even bigger and better!

Until then, enjoy some images and videos of just a few of those who made Sprint4Syngap 2023 an enormous success! There’s plenty more smiles and love (and videos!) at Sprint4Syngap2023 – Shared SRF Photo File. If you want even more, check out the action at #Sprint4Syngap2023 on Facebook and other social media platforms.

Team Tavilla & Boston Gathering
Saylor & Kai’s Family & Friends in North Carolina
Amelia Gomez & Family in Florida
Phoebe’s Fight Strolling Along
The Barnes Family in Boston
Fondo Syngap – Fun for the Kids in Medellin, Colombia
Gracyn of Team Gracyn and her friends in New Jersey
Syngap Sibling Everly Tavilla & Syngapian Kerry Beswick leading the way!
Team Mya, Family & Friends in Canada
Team Chase in Canada
March4McKaela in Tennessee
Team Naya part 1
Team Naya part 2
Scientists visited Boston (L-R): Dad Neal Beswick, Tia Dey (Axonis), Xin Tang (Tang Labs) w/ daughter, Shilpa Kadam (Axonis), Kerry Beswick & Kim Wiltrout (Boston Children’s pedi neuro/epilepsy)
Mya, Hadley, Phoebe
Team Kai, Family, & Friends in Maryland
Team Andrew in SoCal
Team Patrick in Ohio
Team Emma Mae in Indiana
SRF in Jupiter, Florida
Myla Tavilla with parents, along with Shilpa Kadam (Axonis),Xin Tang (Tang Labs), and Tia Dey (Axonis)

THANK YOU ALL!

Some of the 150+/- attendees in Boston