SALEM- Registration continues for a local fundraiser to benefit research into a degenerative retinal disease.
Presented by Eyes for Olivia and the Canfield Lions Club, the Curing Retinal Blindness Foundation Scrabble Run bike ride and walk is slated for Sept. 22 at Waterworth Memorial Park. Check-in will be at 12:30 p.m. at the main pavilion off of Superior Avenue with bikes taking off at 2 p.m. and walkers leaving the starting spot at 2:15 p.m.
All proceeds will go toward research of the degenerative retinal disease known as Leber's Congenital Amaurosis.
Registration continues for the Curing Retinal Blindness Foundation Scrabble Run bike ride and walk slated for Sept. 22 at Waterworth Memorial Park in Salem. The event is raising funds for research into the degenerative retinal disease known as Leber’s Congenital Amaurosis. Pictured are event organizers Mike and Kim Hoffman with their 7-year-old daughter, Olivia, a second grader at Buckeye Elementary who suffers from a rare version of the disease. (Salem News photo by Kevin Howell)
According to event event organizer Kim Hoffman, whose 7-year-old daughter, Olivia, a student at Salem's Buckeye Elementary, suffers from the rare CRB1 for of the disease, doctors are in the process of developing gene therapy to battle CRB1, but it is still in the early stages and will take a long time before an effective medicine is available. She said according to retinal specialist Dr. Jan Wijnholds, research will include production of a clinical gene therapy vector, then toxicity tests and finally clinical phase tests, all of which requires significant funding.
"There's progress being made, but we have to keep raising funds, keep putting money toward funding to keep the research going," Hoffman said.
A twist on the the typical bike/walk event, the scrabble run provides participants with Scrabble pieces along the route and have them form words for prizes at the finish line.
The cost for those who pre-register is $15 for an individual or $40 for a family. Pre-registration packets, which will be handed out the day of the event, will include a T-shirt, participant wristband and one scrabble tile. Families will receive three scrabble tiles for up to three people. On the day of the event, the price goes up to $20 for an individual and $50 for a family. For a family with a lot of kids, parents can walk the course with the children and don't have to register themselves. To pre-register, become a sponsor or learn more about the event, go to www.eyesforolivia.org.
Participants will stop at seven checkpoints to receive seven additional tiles, with a form to be marked at each checkpoint. At the end, participants will write their word on the form and turn it in for a chance at two grand prizes and several secondary prizes of Scrabble games. The grand prizes will be bicycles. Participants will be divided into two age groups, younger children and then older teens and adults.
Information about sponsorships available are on the website at www.eyesforolivia.org. People who want to volunteer or businesses who want to donate coupons or promotional items for the pre-registration bag can contact Kim by email at firstname.lastname@example.org.
Hoffman said registration is already over 50 and climbing.
"The support has been phenomenal," she said. "It's just been amazing how the community is showing support for Olivia and the children (with CRB1)."
The fun will continue after the bike ride/walk with a carnival on the park grounds featuring games and activities and food for purchase. The cost of carnival tickets is five for $3 and 10 for $5, with the tickets used for everything, including the food, which will feature hot dogs and hamburgers, cotton candy and sno cones. The games will include putt putt golf from the Canfield Lions Club and a football toss manned by YSU football players.
Rea's is donating pumpkins for pumpkin painting, Angels for Animals will bring some animals, Aut Mori Grotto clowns will come out and Salem Self Pro Martial Arts will do a demonstration. Also coming to the event will be the Salem Fire Department, Salem Police Patrolman Brad Davis and North Star Critical Care. A disc jockey will provide music.
Hoffman said visitors may attend the carnival without participating in the scrabble run.