Dino Dash for Declan 5K

 

Declan is 5 years old. He is a happy and energetic little boy, but he is in the fight of his life.  He was diagnosed with a terminal and rapidly degenerative disease called Sanfilippo Syndrome, often referred to as a 'Childhood Alzheimer's'.  Despite this, his spirit shines through. 

 

We will love him every single moment, and HOLD onto hope that he might be able to be treated with experimental drugs being given in clinical trials.  It’s the only hope for Declan and many children suffering from Sanfilippo Syndrome. And unfortunately, the world of rare disease clinical trial research revolves around money. We need to fund research, clinical trials, and treatments so that more children might have a chance...a chance at LIFE literally.  And with that, we have decided to host the Dino Dash for Declan 5K. Come out for a fun day to celebrate Declan and to fight for a cure!  Our deepest thanks, Kelly Martin and the Sink Family

 

TO REGISTER NOW, click HERE.

 

 

 

About Cure Sanfilippo Foundation

 

IMAGINE ALZHEIMER’S, BUT IN CHILDREN.

In a nutshell, that’s what every family of children with Sanfilippo faces. Our children are born with a genetic defect passed on from each parent that results in their body being unable to break down and recycle natural cellular waste due to a missing enzyme. Because the waste isn’t broken down, it builds up in their brains, taking away all their skills and knowledge until they pass away in their early teens.

 

Our mission is to advocate for and fund research directed towards a cure or treatment options for children with Sanfilippo Syndrome.

 

WE RAISE MONEY & FUND RESEARCH

Our efforts are global and far reaching as our goal is to end a disease. When the disease first starts showing around age 3, we parents are just beginning to see our child’s personality and potential….and then it is all taken away. Today, nothing exists to stop this, but real HOPE is on the horizon. Breakthrough science has discovered treatments and a hopeful cure which have proven in research models to slow or stop Sanfilippo. We fund this most promising research to bring about more clinical trial options…a life line for these kids.  

 

Thanks to supporters like you, we have funded 10 research grants around the world in gene therapy, enzyme replacement, mesenchymal non-embryonic stem cells, high throughput screening, pre-existing antibodies, and several others. Some of this science which works on pathways to crossing the blood brain barrier and stopping and repairing brain function could have applications for larger neurological disorders, such as Alzheimer's or Parkinson's. We helped fund a first-in-the-world intravenous gene therapy project that is now in clinical trial and treating a small number of children. We look to fund new translational research to treat many more children. We are making a difference, thanks to you.

 

WE ADVOCATE AND SPREAD AWARENESS

 

We drive collaboration by supporting and uniting Sanfilippo families working toward a common goal.  The families are core to our fundraising, awareness and advocacy efforts. We hold group calls with Sanfilippo families and facilitate calls with Sanfilippo Foundations around the world. We advocate for earlier diagnosis and introduced a resolution through the American Academy of Pediatrics for improved early diagnosis of MPS disorders, which was passed at the national level.  We advocate for newborn screening and work with EveryLife foundation to promote advancement for all rare disease. We increase awareness among medical professionals, the general public, and have had hundreds of media outlets cover our Foundation (including The Today Show & The Doctors TV Show). We have a database of over 30,0000 supporters and created “viral” videos that amassed over 1 million views. Awareness furthers our mission and helps, but research is enormously expensive and we need to fund a new clinical trial for children in gene therapy.  We can't make enough progress in time to save children today, without outside help. 

 

For more information, please visit our website or Like us on Facebook.