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Finley's Fighters holding fundraiser Saturday at Connellsville Yough River Park

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Pletcher

Update on Finley

Finley is going to be in second grade in the fall. She had a difficult year with changes in her vision, so she is going to repeat the second grade. The team at school and her parents decided that with her having difficulty learning print and braille and trying to keep up, it would be better to give her another year to become a more confident learner.

Finley's central vision loss increased a few more degrees, and her peripheral vision field shrank 5 degrees. Her vision in the areas she has left is 20/200 in her weaker eye and 20/100 in her better eye. She almost exclusively uses her right eye to see because her left eye has become so weak. There isn't anything that can be done about the loss at this time. The only thing that will work is a cure.

Finley is learning braille and becoming more and more proficient at reading and writing it. She is using a cane but does not use it consistently, because she hates it.

She enjoys art and painting. She also loves running and is participating in a track and field camp this summer with her sighted peers. She has started a ballet/tap/jazz class that she will continue through the next year.

More than anything, Finley just wants to be like everyone else. She doesn't want to stand out among her peers or have people feel sorry for her. She has shown that even with her limited vision, she is still able to do almost everything her friends can do.

“We hope that this spirit continues as her vision diminishes. And we hope the cure comes in time before she loses it all,” her mother Jennifer Pletcher said.

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Sunday, Aug. 10, 2014, 6:33 p.m.
 

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 12 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 12 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.

 

 
 


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