The Journey
Our very first gala, held on October 1, 2014, raised funds in support of the Sanfilippo Children's Research Foundation — a family-driven organization dedicated to funding a cure for Sanfilippo Syndrome, a rare and devastating disease that robs children of their development, their memories, and ultimately their lives. This was where Emajjin's journey began.
We are in awe of the efforts you and your team from the Emajjin Children's Foundation went to to create such an amazing event and raise these funds for the SCRF. $15K is huge and will be a huge help towards making these clinical trials possible. The words "Thank you" just don't seem to be enough to convey our appreciation for all you have done, but I'm saying them anyways! It was a great memorable night for us and our family. We were thrilled to be a part of it and the recipient of your generosity and love.
Our inaugural gala was held on October 1, 2014, in support of the Sanfilippo Children's Research Foundation. It was the beginning of a journey — both for the Foundation and for the families whose lives we hoped to touch.
Children with Sanfilippo Syndrome are missing an essential enzyme that breaks down a complex body sugar called heparan sulfate. This sugar slowly builds in the bones, the brain, and other organs — stopping normal development and causing hyperactivity, sleep disorders, loss of speech, and ultimately death by the mid-teens. There is no cure.
Emajjin's inaugural gala raised $15,000 toward funding clinical trials that could one day change that. Every dollar raised was a step forward on the journey toward a cure — and the beginning of a tradition of giving that continues to this day.
Children with Sanfilippo Syndrome are missing an essential enzyme that breaks down a complex body sugar called heparan sulfate. This sugar slowly builds in the bones, the brain, and other organs — stopping normal development and causing hyperactivity, sleep disorders, loss of speech, mental retardation, dementia, and finally death by the mid-teens. There is currently no cure or treatment.
Entitled "A Life For Elisa," the ultimate goal of the foundation is to raise money to fund research and hopefully find a cure in Elisa's lifetime. 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 special ways — helping to raise over $7 million for research since 1999, with a remarkable 96% of every dollar donated being committed to research. While Sanfilippo occurs once in 24,000 births, successful research into the disease could apply directly to related genetic conditions that affect 1 child in 5,000.
Visit A Life for ElisaA family-driven Canadian foundation funding research toward a cure for Sanfilippo Syndrome, a rare and fatal childhood disease.
www.alifeforelisa.org →
