Finley's Fighters holding fundraiser Saturday at Connellsville Yough River Park
Finley Pletcher, a second-grade student, was originally diagnosed in 2009 with Lebers Congenital Amaurosis RDH12 (LCA RDH12).
In 2010, the nonprofit foundation RDH12 Fund for Sight was developed by Finley's parents, Jennifer and Mat Pletcher, who are originally from the Connellsville area, and three other families.
Today the organization is 21 kids and 19 families strong.
The group recently donated $350,000 for RDH12 research to Dr. Debra Thompson at the University of Michigan.
Locally, Finley's Fighters has been doing its part in the fight.
The organization is determined that Finley and others like her can keep their eyesight.
“Mat and a few of the other families, and their affected kids, met with Dr. Thompson and our researcher in England — Dr. Robert Ali — in the spring of this year. It was the first time that the researchers had a chance to meet the children in person. Both doctors stated that the kids inspired them to work even harder for a cure,” said Finley's mother, Jennifer Pletcher, who is the daughter of Ted and Phyllis Kovall of Connellsville.
“Right now the research is progressing as planned. Dr. Thompson is confident that this fall we will be going to the FDA to discuss what they will be looking for to approve a clinical trial. Dr. Thompson feels she has all the information/research necessary to go forward with that meeting,” Jennifer Pletcher said.
Clinical trials will be near the end of 2015 or the beginning of 2016 if all goes well. The biggest hurdle is money. While the RDH12 Fund for Sight has raised $1.2 million for research, Jennifer Pletcher said another $1.6 million must be raised for the clinical trials to begin. She said this year will be the biggest push ever made by the group, and it realizes it won't be easy.
“It is going to be hard. We are going to need the support of all of our friends and family and strangers, and businesses, and friends of friends to get this done,” said Jennifer Pletcher.
In order to help, the 4th Annual Finley's Fighters 10K, 5K and 1⁄2 mile fun run fundraiser will be held Saturday at Yough River Park.
Registration online is at finleyfighters.com or the day of the race starting at 8 a.m.
The 1⁄2 mile race begins at 8:50 a.m. The 10K run begins at 9:15 a.m. and the 5K run and walk begin at 9:20 a.m.
Lunch starts at 10:45 a.m. and the event ends at 12:30 p.m.
Now through race day, registration prices are $25/person or $70/family (of 3 or more) and registrants receive a shirt, goody bag, bag check and food. Children younger than 3 are free for food and registration (no shirt). Checks can be made out to RDH12 Fund for Sight.
All kids younger than 18 will receive a hand-carved medal no matter which race they run. There will be a bounce house, hair feathers, face painting, music and a basket raffle including a handmade Elsa Princess dress from Frozen, an American Girl doll, tickets to a Pittsburgh Penguins game, a Connellsville basket featuring an overnight stay at the Connellsville Bed and Breakfast and gift certificate from Cafe Carnegie, a toy basket, a Kindle basket, a gardening basket, a lottery ticket tree and many more. Pre-sale chances and photos of the baskets are on the Finley's Fighters Facebook page.
“If you don't want to race, just come with your family and enjoy the activities and help us help Finley,” said grandmother Phyllis Kovall.
Those who are unable to attend the event, but would like to make a donation, can make a check out to RDH12 Fund for Sight and mail it to: Phyllis Kovall, 1231 Sycamore St., Connellsville, PA 15425. For credit card donations, please visit: http://www.rdh12.org/donating.html.
The RDH12 Fund for Sight members have decided to start a campaign this fall called One for a Million (www.1foramillion.com).
The website explains how the RDH12 Fund for Sight journey began toward a cure for genetic blindness.
With the campaign, the group is asking for only two things — a single dollar and help spreading the word and work of the RDH12 Fund for Sight.
Nancy Henry is a contributing writer.