I’M OFF TO PERU!! Myself, along with a team of 12 other climbers, will embark on a 2 week journey that takes us up the historic Inca Trail to Machu Picchu in an effort to raise money & awareness for Sanfilippo Syndrome. What is Sanfilippo Syndrome? It is an inherited mucopolysaccharide disorder (MPS) that occurs approximately 1 in every 24,000 births. Children diagnosed with Sanfilippo Syndrome lack an essential enzyme that breaks down a complex body sugar called heparan sulfate. As a result these sugars accumulate primarily in the cells of the bones & brain, along with other principle organs, inevitably stopping normal development & causing death at a young age. Initially, affected children will appear to have normal development & will not begin to show signs of digression until the age of 4; loss of speech occurs at 7, wheelchair confinement at age 10, bedridden by 14 & eventual death in late teens to mid twenties. Currently there is no cure or treatment.
Why Sanfilippo Syndrome is so Important to Me
At the age of four, my cousin Elisa Linton was diagnosed with Sanfilippo Syndrome & upon learning of the diagnosis, my Aunt & Uncle were told by doctors to go home & enjoy what little time they had left with their daughter. Furthermore, they were informed that there was absolutely no research being conducted throughout the entire world, & some doctors weren’t even aware this disease EXISTED. What’s remarkable about my aunt & uncle however, is that instead of succumbing to this disease, they decided to devote their lives to helping Elisa & children like her. In 1999, my Aunt & Uncle founded the Sanfilippo Children’s Research Foundation (SCRF) & have since raised over $4.5 million dollars, funding 30 research initiatives & projects worldwide. Annual golf tournaments, gala dinners, garage sales, marathon runs & an incredible community of dedicated volunteers & donors have all helped contribute to this astounding accomplishment. Not only has SCRF provided an enormous financial contribution to the medical community, but more importantly an incredible social support system & network for those also affected by Sanfilippo Syndrome that otherwise would have been left in the dark. My aunt & uncle have since been honoured for their bravery & devotion by earning:
- North York Mirrors, Urban Hero Award, 2013
- Walmart Mom of the Year finalist, 2013
- Today’s Parent Magazine – Today’s Hero, 2005
- Governor General’s “Caring Canadian Award”, 2005
- Toronto Marathon’s Human Spirit Award, 2004
- Ralph Bloss Humanitarian Award, 2004
- Sally Henry Memorial Award, 2002
- Flare Magazine- Volunteer of the Year, 2002
They are truly Super Hero’s in the flesh.
Currently, a package has been submitted to the FDA proposing a gene therapy clinical trial in patients with MPS III & come the end of fall, will be APPROVED. For the first time ever, clinical trials will begin with two different potential treatments for Sanfilippo Syndrome, pending financial support. Although it will be too late for Elisa, the legacy she leaves behind will be without a doubt awe-inspiring, representing hope & health for thousands of children across the globe. Our goal in hiking the Inca Trail is to raise finances & awareness for children with Sanfilippo Syndrome so that clinical trials can begin this year. I am so incredibly honoured & humbled to call Elizabeth & Randall Linton my family & to embark on this wonderful journey with them.
I would like to take this opportunity to thank each & every single person who has donated to myself & my brother’s trek. Your contribution has not gone unnoticed & we are so grateful. Thus far, my brother & I have raised $7,500. This money will go directly toward research; my trip along with everyone else’s is paid for out of our own pockets – trust me, our bank accounts are all well aware ;).
Wish us luck in our trek up the Inca Trail!
If you would like to contribute to our cause & find out more about Sanfilippo Syndrome, please click on our link here