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The Amazing Give 2021 | April 22, 2021 – Northern Florida

April 22, 2021 @ 7:00 am - 7:00 pm

Over the past five years, the Northern Florida region has come together to give more than $3 million dollars to nonprofits that benefit the area through The Amazing Give. The Amazing Give 2021 will continue that tradition.

The Amazing Give is a great opportunity to show your dedication to making the world a better
place, including finding a treatment or cure for Sanfilippo Syndrome.

Every child is a precious gift. Every child deserves the opportunity to LIVE, without suffering and pain. Cure Sanfilippo Foundation is passionate about helping this one very basic wish for LIFE come true for children around the world and right here in Florida. Children like Blair, Ross and Meredith, Victoria, Zoe, Belle, and Rowen.

Sanfilippo Syndrome (MPSIII) is a caused by a genetic enzyme deficiency that leads to a progressive dementia. The effects on a child’s brain are similar to what is seen in Alzheimer’s disease. Due to the rapid nature of the neurodegeneration, we are in a race against time. Symptoms begin to appear around 3 years of age, at a time when you are just beginning to know your little one’s unique personality. Quickly though, the storage material in the brain builds up to a critical mass, causing loss of speech, sleeplessness, declining ability to learn and understand, seizures, and dementia. From there the child will need a feeding tube & wheelchair, and children commonly pass away in their teen years, yet this is preceded by these many years of suffering and disability. It is a devastating disease.

Today, no proven treatment or cure exists, but real HOPE is on the horizon. Breakthrough science has discovered treatment options which have proven in pre-clincial research models to slow or stop Sanfilippo. Cure Sanfilippo funds the most promising research to bring about more clinical trial options…a life line for these kids, before it is too late.

In 7+ years, thanks to incredible support and generosity, the Foundation has funded more 30 research projects around the world, leading to first ever clinical trials in children. Some research areas funded include two gene therapy projects, enzyme-replacement, gene modified mesenchymal stem cell, high throughput screening, viral antibody suppression, among others.

In essence, Cure Sanfilippo Foundation is funding research that is helping unlock mysteries of the brain, and could potentially bring insight into more common neurological disorders such as Alzheimer’s and Parkinson’s.

Every child is a precious gift. Every gift received during The Amazing Give, brings more HOPE to these families and children.

Details

Date:
April 22, 2021
Time:
7:00 am - 7:00 pm
Event Category:

Organizer

Cure Sanfilippo Foundation
Email:
curesff@gmail.com
Website:
CureSFF.org