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Press Release

Tampa Bay Cyclist Will Ride Coast to Coast to Find a Cure for Niemann-Pick Type C

Hopeformarian.org
Posted on: 31 Oct 17

LOS ANGELES and TAMPA BAY, Fla., Oct. 30, 2017 /PRNewswire/ -- Sean Griffith and Marian McGlocklin live on opposite sides of the country and have never met each other, but after hearing about how Marian is fighting for her life against the rare and fatal Niemann-Pick Type C (NPC), they have been united by a common cause: Hope.

At 18-months old Marian was diagnosed with NPC— a rare, incurable progressive genetic disease. As it progresses, NPC causes dementia and the gradual but complete loss of the ability to move, eat, speak and breathe. Without intervention, half of all children diagnosed with NPC die before the age of 10.

After hearing her story and with a cure in sight, Sean couldn't sit idly by while Marian fights for her life. A registered nurse, Sean Griffith heard about Marian and wanted to do more than just donate to her cause. He wanted to help raise awareness to drive the funds needed to find a cure, so that Marian can be part of the first generation of patients to be cured of NPC.

"When Sean told us what he was going to do, we were overwhelmed by this amazing act of kindness from a stranger," said Sara McGlocklin, Marian's mother. "Niemann-Pick Type C is a terrible disease, but so much beauty is coming out of this experience in the form of people like Sean who are helping to raise awareness and bring Hope for Marian and all kids with NPC. We are so close to finding a cure, and that's why raising funds is critical right now and why Sean is doing this ride. It's about saving lives and we are more grateful to Sean for his effort than we can ever express."     

Sean is a Registered Nurse, an avid cyclist, animal lover and nurturer who has dedicated his life to helping others, both personally and professionally. He currently serves pediatric and adult patients in the Tampa Bay area, where he specializes in infusion care for isolated, chronic and terminal illnesses.

On November 1-4, Sean will cycle across the state of Florida (~160 miles) to raise funds and awareness for lifesaving NPC research. He will ride 50 miles a day, stopping at one hospital each day to talk about NPC, share Marian's story and challenge hospital staff to the NoPuckerChallenge, further spreading the word to raise funds for NPC.

Community Support
The Tampa and St. Petersburg communities are rallying behind Sean with donations from local businesses including Chick-Fil-A, the TradeWinds Resort and The Hotel Zamora. The donation of accommodations are enabling two NPC families to travel in for the finish line to cheer on the man helping to fight for them to live. Kamryn Brumbleloe, age six from Alabama, has been fighting NPC since 18 months old. Liam Ferguson, age three from Virginia, has had over 10 major surgeries in his life due to NPC. Kamryn, Liam and Marian are three children whose lives are on the line for a cure to be found in time.

More about Marian                          
Two-year old Marian is currently one of the youngest patients on an experimental treatment, VTS-270, which slows the progression of NPC, giving her critical time to live. Currently, VTS-270 is in a phase 3 clinical trial and is administered to Marian via spinal tap under general anesthesia every two weeks, for the rest of her life. Marian has shown incredible improvements since she started treatments: she is walking, talking, and reaching new milestones. This is not a cure, but it is buying time as doctors and researchers come ever closer to breaking through to a cure. You can follow and find out more about Marian's story at Hopeformarian.org. To help spread awareness about Niemann-Pick Type C, we encourage everyone to take the #NoPuckerChallenge and share with friends.

All money raised through Hopeformarian.org directly supports the research efforts of Support of Accelerated Research for NPC (SOAR) and the Ara Parseghian Medical Research Fund at Notre Dame (APMRF).

About Hopeformarian.org
Hope for Marian has an application pending for 501(c)(3) status as a charitable organization intent on finding a cure for NPC. Our tax identification number is 82-2329864. Every dollar raised will go to find a cure.

Media Contact:
Ronjini Joshua
182755@email4pr.com 
(562) 241-1668

Editor's Details

Mike Wood
PharmiWeb.com
www.pharmiweb.com
editor@pharmiweb.com

Last updated on: 31/10/2017

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