The goal of The Sanfilippo Children's Research Foundation is to fund medical research to find a cure for Sanfilippo syndrome and its related neuro-genetic disorders.
About THE SANFILIPPO CHILDREN'S RESEARCH FOUNDATION
THIS IS A REMARKABLE STORY OF FAMILY, FAITH AND SELFLESS SACRIFICE.....
Although Elisa Linton appeared completely normal at birth, she was diagnosed at the age of four with a rare genetic disorder called Sanfilippo syndrome, MPS lllB, for which there is no cure or treatment. Elisa lived to the miraculous age of 22 but Sanfilippo syndrome sadly claimed her life on October 31st, 2016.
Children with Sanfilippo syndrome are missing an essential enzyme that breaks down sugars, resulting in a build-up of them in the brain and other organs, ultimately stopping development and causing hyperactivity, sleep disorders, seizures, loss of speech & mobilty, mental retardation, and dementia. Most children do not live to adulthood.
Instead of succumbing to the disease however, Elisa’s parents Randall and Elisabeth chose the road less traveled and began a foundation in 1999 to share the story of their daughter, spread awareness about Sanfilippo syndrome and connect families with Sanfilippo children from around the world. Entitled “A Life For Elisa” the ultimate goal of the foundation is to raise money to fund research and was to hopefully find a cure in Elisa's life time – it is a daily crusade that the Linton family willingly charts. Siblings Jessica and Connor, along with their parents, have devoted their lives to helping Elisa and bringing hope to every family who has a child afflicted with Sanfilippo syndrome. Their community of friends, medical specialists and local businesses have all joined in, surrounding this family with love, prayers, financial support, and volunteering in many ways, helping to raise over $7 million for research since 1999 with a remarkable 96% of every dollar donated being committed to research.
In 2017 The SCRF establish The Elisa Linton Sanfilippo Research Laboratory at Ste. Justine Children's Hospital in Montreal, Que through a $1M endowment fund thanks to the generosity of donors supporting Sanfilippo families here in Canada. We are currently on a campaign to raise $200,000 to purchase needed equipment and support Sanfilippo research at SickKids hospital in Toronto. Any donations would be greatly appreciated.
While Sanfilippo occurs once in 24,000 births, successful research into the disease could apply directly to related genetic conditions that affects 1 child in 5,000.