October marks the start of NPC Awareness Month. Hopeformarian.org and the NPC community are launching the #NoPuckerChallenge to drive awareness of a fatal and rare genetic disorder called Niemann-Pick Type C (NPC). Greater awareness will bring scientists closer to a cure for children like 2-year old Marian McGlocklin.
Marian was diagnosed with NPC at 18 months. Marian is in a fight for her life and receives a spinal tap every two weeks to stay alive until a cure is found. She is one of the youngest on a clinical trial for an investigation medicine, VTS-270, to do so. Scientists have already discovered this one avenue for slowing the progression of NPC and are on the cusp of more life-saving discoveries. But, there is no cure and NPC is still fatal. Fifty percent of children like Marian won’t survive to age 10.
“Without a cure, Marian will lose her ability to speak, eat, move and remember until she dies,” says Sara McGlocklin. “These past few months have been a miracle to see Marian come to life again. At 20 months Marian could not take a single step. At 23 months and after eight treatments, she can very proudly walk across the room. Our hope is that The No Pucker Challenge can bring enough awareness to the disease to help doctors get to a cure faster.”
Every dollar raised by the #NoPuckerChallenge will directly fund and accelerate research conducted through Support Of Accelerated Research for NPC and the Ara Parseghian Medical Research Fund. Scientists believe there is a cure for NPC and increased support may make a life or death difference difference for children like Marian.
The #NoPuckerChallenge is an easy and fun way to spread the word and is currently searching for sponsors, champions and challengers. It’s easy to get started:
1) Grab a lemon and bite into it, try not to pucker (although it’s pretty funny when you or your kids do);
2) Challenge three friends and family to do the same, or donate to drive forward NPC trials and research at NoPuckerChallenge.org; and
3) Post your picture or video with the hashtags #NoPuckerChallenge and #cureNPC on Facebook, Twitter and/or Instagram.
Join the McGlocklins, NPC community and a host of influencers who have already taken the #NoPuckerChallenge including Shawn Johnson East and Andrew East, Maria Menounos, Ben Higgins, JJ Hale from The Bachelor, Jared Haibon from The Bachelor, Karla Souza, Rachel Pally , Nikki De Loach, Chris Gronkowski (former NFL), San Gabriel, Monrovia and Roseville Fire Departments, Lehigh University Athletics, ABC 7 Los Angeles reporters, Jennifer Jones from KFI 640 and more.
About the #NoPuckerChallenge
The No Pucker Challenge was started by Sara and Paul McGlocklin who are driven to find a cure for their sweet 2 year-old, Marian, diagnosed with NPC at 18 months. Marian is fighting for her life against Niemann-Pick Type C, a rare degenerative disorder. Ten years ago this would have been a death sentence. Today there is hope.
The No Pucker Challenge was created to drive awareness about NPC and to raise enough funds to find a cure as quickly as possible. With doctors being at the cusp of a group of treatments that may cure NPC for all children, the No Pucker Challenge and a cure can mean life and death for many children now living with NPC.
Links
http://www.nopuckerchallenge.org/