Stopping Sanfilippo Syndrome

On March 18, 2018, a team of 8 climbers brought together by a common cause, to raise awareness and funding to stop Sanfilippo Syndrome, will begin a 6-day climb in an attempt to summit Pico de Orizaba, a stratovolcano in Mexico standing at 18,491feet.

The goal is to prove that no mountain is too high when it comes to saving children’s lives from Sanfilippo Syndrome, a rare and fatal genetic disorder with no treatment or cure readily available.  Children with Sanfilippo rarely live to see their 18th birthday.

The funding from this effort will all go directly to the Team Sanfilippo Foundation (Tsf, Inc), a fully registered non-profit organization created and run by parents in an effort to save their children’s lives.  Team Sanfilippo is currently funding a major clinical trial as well as other prospective trials and research that will ultimately save lives.  With your help, Team Sanfilippo can move these trials and research faster, again, saving many lives.

This climb is unique because each climber is directly affected by Sanfilippo Syndrome.  Carl, the climb organizer, has two children, Ryan and Brayden, that are suffering from Sanfilippo Syndrome.  Thierry’s daughter Zoe has Sanfilippo Syndrome.  Logan’s brother, Levi,  also has Sanfilippo Syndrome.  Jeremy’s brother, Ryan, has passed away from Sanfilippo Syndrome.  Tim, Mark and Michelle are all working on a clinical trial for Sanfilippo Syndrome and Dan has been documenting this journey and has produced the video you see above.

On behalf of the Team Sanfilippo Foundation and the climbers about to take on this endeavor, we thank you for your support and ask that you continue to share our journey and this cause.

”When there is no light at the end of the tunnel, climb higher.”

Donations

 See top
  • Keith Dreher 
    • $100 
    • 33 mos
  • Thomas Furr 
    • $235 
    • 34 mos
  • Anonymous 
    • $20 
    • 35 mos
  • Catherine Prochazka 
    • $50 
    • 35 mos
  • Roslyn Sturdivant 
    • $50 
    • 36 mos
See all

Organizer

Carl Stephen 
Organizer
Wilmington, DE
Tsf Incorporated 
Registered nonprofit
Donations are typically 100% tax deductible in the US.
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