BENEFITING: Sanfilippo Research Foundation, Inc.
ORGANIZER: Sanfilippo Research Foundation, Inc.
The Sanfilippo community is coming together to raise money to fund gene therapy clinical trials at Nationwide Children's Hospital. The research has been done, a Natural History Study is underway and now we are preparing for human trials. Given the lack of funding for rare diseases it often falls on families to raise the necessary cash to get trials started. This is our push to fully fund the clinical trial to see if we can finally have an effective treatment for Sanfiliipo Syndrome.
When Waverly & Oliver were diagnosed 6 years ago, we were told there was nothing we could do. We believe it is too late for our children, however we hope there will soon be a day when parents are told there is treatment for their child.
Many of you don't live nearby and often ask us how you can help. Here is a simple way.
*** Donate!! Every dollar helps.
*** Share!! Ask your friends to join you in this very worthy cause.
Thank you so much for your love & support.
The McNeil family xx www.familymctravels.blogspot.com