A Sanfilippo Story by Grammy L…
Oops… I meant to post this quite a while ago!
The Columbus Blue Jackets hockey team is having a game day for Oliver Friday, February 28th. They play against Minnesota Wild. Portions of the proceeds from tickets purchased through bluejackets.com/oliverstomorrow will go to The Cure Sanfilippo Foundation to help fund a cure. Sanfilippo is described as Childhood Alzheimer’s and, with no cure at this time, is terminal.
My son, Brian, sent out this email:
Hello friends and family of Oliver!
First of all thank you, thank you, thank you for your love and support of Oliver.
We hope your new year is starting off healthy and happy! Oliver, himself, has started off 2020 in his usual good spirits. He is happy to be back in school with his friends and doesn’t miss his morning Larabar. He’s having fun playing with his sister, Reagan, and he’s constantly politicking us to watch Paw Patrol. While we anxiously await to see if he will be included in the clinical trial at Nationwide, we are doing everything we can to make sure his cognitive skills stay as sharp as possible and also get in as many of his classic, big, running-start hugs as we can.
But in the meantime, Oliver wants to invite you to a special night:
On Friday, February 28th at 7pm we are celebrating Oliver’s Tomorrow at Nationwide Arena at the Columbus Blue Jackets vs Minnesota Wild NHL game. The Blue Jackets have partnered with us to help us spread awareness and all children affected with Sanfilippo, especially MPS III B. To top it off, $10-$20 of each ticket purchased will go back to the Cure Sanfilippo Foundation!!
This is going to be an amazing event that will help spread the word and allow us to meet many of you in person. We are asking all in attendance to wear white to have a White-Out for Oliver.
Please check out this link to find out more if you are interested and to purchase tickets:
So thank you all again and we hope to see many of you there.
Jennifer & Brian
Unfortunately, Grammy L won’t be there, but I will wear white that day in honor of Oliver, his family, my family, all of our friends and the Blue Jackets for bringing attention to Sanfilippo Syndrome and for so generously sponsoring this fundraiser to help find a cure.
But I will especially be honoring all the children and their families who are living through this devastating experience! These are the warriors in the trenches. Thank you for having their backs!
To learn more about this syndrome go to http://curesanfilippofoundation.org