DEADLINE TO GIVE: Dec 31, 2016
What is the 50 State Challenge?
The 50 State Challenge is a challenge to raise $40,000 from supporters in each of the 50 States by midnight 12/31/2016, to fund urgent research and treatments for children with Sanfilippo Syndrome. Together, be part of this $2Million campaign for LIFE. Our deepest thanks for your participation and your help to promote and advocate this campaign effort in your state. This cause is to save children's lives now. Can we count on your STATE to meet the challenge?
What is the disease Sanfilippo Syndrome?
Please watch the 3 minute video to the left...of just one family's story, yet EVERY Sanfilippo family's reality. Pan through the photos of just some of the beautiful children. Sanfilippo is a rapidly progressive degenerative and terminal genetic disease. You can think of it like a very fast-moving Alzheimer's...but in little children. Currently there is no cure or treatment, but there is HOPE in various breakthrough research that has shown it can slow & halt the disease. Funding to bring these research methods to clinical trials is limited, and TIME is critical.
Who will this funding benefit?
This funding can help so many children, whose lives hang in the balance, all over the country. The research and science is showing remarkable breakthroughs and the time is now. These innocent little girls and boys hope for just a chance at life beyond the grips of this disease. Children like Eliza, Rylan, Nola, Gabo, Rebecca, Garrett, Ross, Meredith, Paisleigh, Will, Abigail, Logan, Keira, Luke, Seth, Reagan, Quinn, Rebecca, Rowen...and this is just to name some of them. There are many many more across the country and so many not yet diagnosed.
Where do the Funds go?
The funds raised are 100% tax deductible going directly to the 501c3 non-profit Cure Sanfilippo Foundation and then on to the most promising research. This Foundation, run by parents, has no paid employees ensuring your funding goes directly to support the mission: To fund urgent research, treatments and hopeful clinical trials for as many children as possible. More information on the Foundation at www.CureSFF.org (Tax ID: 46-4322131)
Why doesn't insurance or the government pay for this?
In a disease such as Sanfilippo Syndrome, funding from the Government, Pharma, Hospitals and biotechs is severly lacking. While we advocate for more funding from these groups, it is difficult. Due to time for an approved drug to reach the market (which there are none today), many kids' only option will be just a chance to participate in experiemental clinical trials, based on sound research. But we need more research for more trials and we can't sit back, so we must raise as much of the funding as possible ourselves. Without a treatment, the alternative is certain death for each child with Sanfilippo. You see, due to the degenerative nature of this disease, any child with Sanfilippo is already nearly out of TIME. No child should be left behind due to money and time. The Foundation fights for the children today, and hope to ensure a proven treatment or cure will exist for the next generation of children.
What can I do to help?
Thank you and please find YOUR STATE listed below and click on your state page to donate there. And most importantly, please become an advocate to friends, work colleagues, schools, churches, businesses etc.. in your State. To help, please print out copies of the one-page handout about the #50StateChallenge here: HANDOUT LINK. Tell them about this cause and this STATE CHALLENGE..share with anyone you know. Which state can raise the most? The fastest? Have the most creative fundraiser? Get the most people involved? Create the biggest #CureSanfilippo community? Generate the most awareness? YOU can be the difference to advocate to help us reach the $40,000 goal in your state this year. No matter your contribution, we appreciate you joining this fight and we thank you. Because of your action, We have HOPE for our little ones.
**NOTE: We are including online and offline donations. If you will be having a fundraiser in your state for this cause and would like to send a check, or donate directly by check, please make out & send to: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. Write "50 State Campaign" & name of your state on the memo line. We will add in to your state as an offline donation