To help, please share and support at www.helpsimon.com
My name is Alina, my family and I live in Austin, Texas. My 5-year-old son Simon has been sinking baskets on his Little Tykes hoop since he was a toddler. People’s jaws hit the ground when they see his skills. Any parent whose child showed this kind of potential would naturally be thinking about what their future could hold. But Simon’s dad and I don’t get to dream those kinds of dreams. Because of the worst disease you’ve probably never heard of.
Simon has Sanfilippo Syndrome, a genetic degenerative brain disorder in children caused by a single missing enzyme. It’s like Alzheimer’s in children. And unless ongoing research is able to find a treatment, Simon will lose his ability to shoot baskets, lose the ability to walk and talk, suffer movement disorders, and experience a lot of pain and suffering. All before passing away in his early teens.
Like any parent, we are fighting for our son. For his chance at a life without pain and suffering. For a life where he has the opportunity to continue enjoying basketball, the thing that brings him so much joy right now.
Sanfilippo is a rare disease, so it’s up to families like ours to fundraise the millions needed for promising research that could help our children.
We’re working to raise $1 million to help fund two new research pathways that could benefit Simon and other children with Sanfilippo Syndrome. Research that could make a treatment available that allows Simon to live, to thrive, and to someday play on a basketball team.
We have created a three-minute viral video, “Help Simon,” to help raise $1 milllion for this critical research. The video is at www.HelpSimon.com, and it showcases his remarkable basketball skills (truly, you have to see it to believe it) and how it will all be lost because of Sanfilippo, unless research finds a treatment.
Simon's life and any chance of a promising basketball future will be cut short because of this rare disease unless we can help fund research that could give him a chance at life.
Simon can LIVE. Simon can get that chance at LIFE, and it will be thanks to you. But it has to be now.
Our deepest thanks. Words can’t even express how incredibly grateful we are.
Alina, Jeremy, and Simon
HelpSimonNow@gmail.com
-- On Facebook: / helpsimonnow
-- On TikTok: / helpsimonnow and / simons_shot
-- On Instagram: / helpsimonnow
*Donations are tax deductible.*
Tax ID Number: 46-4322131
Other ways to donate:
-- By Foundation's website: Go to CureSanfilippoFoundation.org (click “Donate” and put “Help Simon” in the dedication)
-- By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. (Include “Help Simon” in the memo.)
-- By ApplePay, MicrosoftPay, or ACH: Go to CureSanfilippoFoundation.org/... and select your preferred payment form at the bottom of the screen.
-- To be a recurring donor (monthly, quarterly, weekly, etc.): give.curesanfilippofoundation...
Special thanks to the artists who graciously dedicated their time and talent:
Video by Paul Shirley (www.paullikescameras.com/)
Video Editing by Ben Von Wong (www.vonwong.com/)
Original music by KeithTim Anderson (keithtimanderson.com/)
ISRC: QZELS2190001
Audio mastering by Andrew Kesler (andrewkesler.com/)
Photography by Amy Mikler Kenyon (amykenyon.photography/)
Information for the media: CureSanfilippoFoundation.org/...
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WHERE IS YOUR MONEY GOING?
Every dollar goes to Cure Sanfilippo Foundation, a 501(c)(3) nonprofit organization helping fund promising research to bring about an FDA_approved therapy for Sanfilippo Syndrome that can give Simon and other children a chance at life. Donations may be tax deductible. 100% of the funds raised here will go toward research. Because Sanfilippo’s toxic effects are building up in Simon’s body every day, we are trying to fund this research as soon as possible. It could help Simon and so many other children a chance at a better life, today and for generations to come. **Any donations received above the goal will go directly to Cure Sanfilippo Foundation for additional research projects in need of funding**
15 ноя 2021
