By Nance Ebert, Contributing Writer
Region – The third annual Ride for Sadie will be held at the Shrewsbury Scandinavian Athletic Club (SAC), 438 Lake St., Shrewsbury, Saturday, Sept. 24. The event is a fundraiser for Crusading for Sadie, which was started by Joel and Amanda Laflamme of North Grafton in honor of their daughter who suffers from a debilitating genetic disorder.
Sadie was born in April 2013 with a variety of ailments. She suffers from a duplication mutation in her CDKL5 gene, a rare genetic disorder that generally affects young girls and causes a variety of health problems including developmental delays and seizures. Many who suffer from this cannot walk, talk or feed themselves.
Sadie started having seizures in her second week of life, and at three months was diagnosed as being legally blind. Infantile spasms quickly followed, and her parents were informed at five months that she had a cortical visual impairment.
Joel’s cousin, Fran Laplume of Fitchburg, rides a motorcycle and thought that, through the sport of riding, he could come up with a plan to help raise money for Sadie.
“My husband and I also rode recreationally,” said Amanda. “We agreed that Joel was on to something. The first year we held this event in Leominster and there were over 300 motorcyclists that came to show their support. Fran was truly the catalyst that got this fun event up and running. Without him, none of this would have transpired. We call him the ‘founder’ of Sadie’s Ride.”
The event, sponsored by Beemers Pub & Grill in Fitchburg, will feature live music, barbecue and raffles. The riders will be escorted by Fire & Iron. DJ services will be provided by the Perfect Mix and food will be provided by Big T’s Jerky House.
The festivities begin at 9 a.m. at SAC with registration until 11:30 a.m. Kickstands go up at noon. The cost to enter with a bike is $20 per rider and $10 per passenger. The barbecue will start at 1:30 p.m. after bikers finish the 52 mile course around the Wachusett Reservoir.
This year, Amanda said she is expecting over 450 riders. Although this is a motorcycle benefit, all are invited to attend. The cost for walk-ins who wish to attend the barbecue portion of the day is $10.
“There are only 1,000 cases in the world with those suffering from this genetic disorder,” Amanda said. “To have people see what she goes through and know her can help bring about more awareness.
“We were fortunate to be in proximity to Children’s Hospital, where they test for this and Sadie was diagnosed early on,” she added. ”
Monies raised at the event will go towards CDKL5 research and to help support families who have children with this disorder. Last year’s event raised $5,000. For more information, visit www.crusadingforsadie.com and on Facebook.