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THE RIDE TO CURE NPC


An Unlikely Couple

An avid cyclist, fitness guru (a drug-free Team Universe contestant to be more precise) living in St. Petersburg, Florida. Sean is a beast

A two-year-old California girl from a Los Angeles suburb battling a degenerative disease that always ends in death. Marian is gentle, innocent and full of hope.

A Persona Flip

The ‘rest of the story’ leads to a complete flip of personas.

Sean is a Registered Nurse with 20-years of experience providing care, encouragement, strength, and smiles to his patients. He and his wife Katie have three rescue dogs and a rescue cat. He is unassuming, humble, and kind. If you hit the right chord, you’ll find out that Sean has a soft side.

Marian gets a spinal tap every two weeks. General anestesia. A HUGE Needle in her back. Experimental medication injected to her spine to prevent the degenerative effects of Niemann-Pick Type C. She goes to physical therapy, speech therapy, occupational therapy on the regular. She is always fighting. Marian is a beast.

Sean never met Marian. They live 3,000 miles away. Sean saw Marian’s story and was moved to tears. Then he took action by calling Marian’s Mom with a simple request: “May I ride my bike across the state of Florida to help Marian and other children fighting NPC?”

Sean’s ride is gaining serious momentum. It starts November 1st on Cocoa Beach and ends November 4th on St. Pete Beach. This ride is about more than just Marian. It’s about raising funds and awareness for all the children stricken with Niemann-Pick Type C. It’s about finding a cure.

Sean on Great Day Tampa Bay (ABC10)

Two children, Kamryn and Liam are traveling to Florida to take part in the festivities.

Our hope is that next year, during the Second Annual Ride For Marian, they are thriving and in the process of receiving experimental treatments that will lead to a cure.

Hope is important, ACTION is imperative.  Here is how YOU can help:
  1. Donate at Hope For Marian
  2. Buy a Hope For Marian shirt
  3. Follow Sean’s Ride and SHARE via social media
  4. Take the No Pucker Challenge

Sean sent us this picture yesterday with quick blurb that is a good way to close.

Getting Ready! 48 mile ride today 15 miles had 20+ MPH head winds, which was not much fun….althought it was hard its no comparison to what Marian and other children with NPC go through everyday. So glad to be part of this.

Thanks Sean and the entire team making the Ride For Marian happen. Cheers to the start of something BIG!