PLEASE help us in the battle against Sanfilippo!
This is our 4th Annual Spencer's Sprinters Event. Past participation and support has been AMAZING, and
We've had the LARGEST TEAM the past 3 years! Even though the event will be held virtually, we hope to have the biggest team again this year.
While the world is united in sharing resources and research to find a Covid-19 vaccine, Spencer's family and all of the other Sanfilippo families are alone in their uphill struggle and race to raise research funds to find a cure to save Spencer and other children like him. During this COVID-19 pandemic, the fatal, incurable Sanfilippo Syndrome hasn't stopped progressing in Spencer and other Sanfilippo Children, so we hope you'll JOIN OUR TEAM or DONATE to help us save Spencer's life.
Join us as part of team "Spencer's Sprinters" in running in the virtual Genesis Battlegreen 5k run/walk or 10k run/walk on November 1st.
If you can't join us, please donate.
Please visit the website to read more about the cause and how to sign up for the race! https://give.curesanfilippofoundation.org/SpencersSprinters
A little more about the cause:
As many of you know, Spencer Smith is the sweet son of our friend and board member, Alli Smith. Like all young children, Spencer loves to splash in the pool with his daddy, read books with his mommy, and zoom around on his bike. But unlike most boys and girls, he's battling MPS-III, commonly known as Sanfilippo Syndrome.
Sanfilippo Syndrome is a genetic neurological disorder that can most-easily be understood as "childhood Alzheimer's." Both are a death sentence, but where Alzheimer’s strikes people toward the end of their lives, Sanfilippo attacks kids just as they have begun to learn to walk and talk.
Also unlike Alzheimer’s, Sanfilippo is considered an "orphan disease," which means there isn’t enough incentive for drug companies to pursue a cure. There are several teams of researchers around the world who are studying ways to treat Sanfilippo kids like Spencer who lack an enzyme that breaks down complex chains of glucose.
Sadly, some of the treatments already put through clinical trials have not panned out. What this means: without more awareness of this terrible disease, and crucially, the money to fund more research, many kids with Sanfilippo will die as their peers head off to high school.
We don't want Spencer to be one of them. We don't want Spencer to stop being able to walk, and eventually, to swallow and eat on his own. All of which could begin happening, progressively, as early as the year he should be entering first grade.
This year is especially meaningful because Spencer became a big brother in June. Spencer will probably never be a typical big brother, but we want him to have as much time as possible with his little sister Sydney.
DONATE or JOIN Spencer’s Sprinter’s today!
Carol Sullivan & Alli Hinman-Smith