Cure Sanfilippo Foundation


Videon som samlade in $500,000 på 15 dagar i USA.
Vår älskade Maia är idag ungefär jämnårig med Eliza i videon och fick sin Sanfilippo-diagnos när hon var drygt 1 år. Kan vi hjälpas åt att dela videon även i Sverige?! Och hoppas att responsen gör att vi kan stötta forskningen ytterligare och öka medvetenheten om denna hemska sjukdom.
Hjälp till att dela och informera. Tillsammans gör vi skillnad!

Saving Eliza update 2017

WE’RE WORKING TO CURE SANFILIPPO SYNDROME

When our daughter Eliza was diagnosed with Sanfilippo Syndrome at the age of four, we decided we had to do everything possible to find a cure. It was the motivation that any parent can relate to as you will “got to the ends of the earth” for your child.  So, we created Cure Sanfilippo Foundation in order to pursue every avenue to change the fate for every Sanfilippo child, not just our daughter.  TIME is not on these children’s side, so the URGENCY is paramount.  Cure Sanfilippo Foundation has come to represent a collection of Sanfilippo families (more than 65 now) and friends/supporters from across the country fighting to save our children under a single umbrella. There’s HOPE for a cure, and that HOPE comes from the ACTION that is being taken from supporters like you, to further this mission to save children, and cure Sanfilippo. 

– Glenn and Cara O’Neill, parents of Eliza

Cure Sanfilippo Foundations hemsida finns en sektion som heter ”Meet the families” där drabbade familjer beskriver hur det är att leva med Sanfilippos sjukdom.

  • The Rixer Family
  • The Rixer Family

“MAKE THE BEST OF EACH DAY, CHERISH EVERY MOMENT, AND HUG YOUR CHILDREN.”
The Rixer Family