Fight to help Finley continues
Last summer, the Connellsville area took the plight of a young girl going blind because of a genetic disorder to heart. The outpouring of support for 5-year-old Finley Pletcher has led to research that could preserve her sight and the sight of others with the rare RDH12 gene mutation of Leber congenital amaurosis.
Finley is the daughter of Jennifer and Matthew Pletcher, originally from Connellsville. They live in Connecticut. Her grandparents are Ted and Phyllis Kovall and Ben and Sally Pletcher.
Without a cure, Finley will go completely blind by her teen years.
But the Pletchers and the Kovalls have hope for Finley and other children with the same mutation.
Jean Bennett, M.D., the Kirby Professor of ophthalmology and cell and developmental biology at Penn State, has cured an LCA mutation on the RPE65 gene through gene therapy, and her current research into curing RDH12 through gene therapy is very positive.
To fund research, Finley’s family has been raising money for 13 months.
The First Annual Finley’s Fighters Fun Run/Bike/Walk for a Cure will take place from 10 a.m. to 2 p.m. on Aug. 20 at Yough River Park, pavilion one.
The day of fun will begin with a noncompetitive run, walk or bike trip on the Great Allegheny Passage. Participants will explore the trail on their own. Those who do not want to go on the trail can visit with Finley, her family and friends, swim, paddle on the river or enjoy the new playgrounds in the park.
Ladies of the Connellsville Moose Lodge 13 will make ham barbecue. Lunch will also include hot dogs, chips, fruit and cookies. It will be served from 11 a.m. to 1 p.m.
In addition, tickets for a gift basket raffle will be sold. One raffle includes an extra-large Winter Classic No. 87 Crosby jersey signed by Sydney Crosby. The Pittsburgh Penguins donated the jersey. Included is a certificate verifying Crosby’s signature. A “Harry Potter” book signed by J.K. Rowling and a signed Dean Koontz book will be raffled, too.
Pre-admission is $20 per person or $50 per family of three or more through this week. Admission on the day of the event costs $25 per person or $55 per family. These admissions include a shirt, personalized braille bookmark and lunch. For lunch only, donate $5. A braille bookmark will be included. Children younger than 3 are free.
Children’s activities include a bounce house, face painting, balloon animals and treat bags.
All trail activities are voluntary.
“You can just come and relax at the pavilion, watch the children’s activities, enjoy the delicious food, buy tickets on great baskets and the Crosby signed jersey, meet Finley and join our fight for her sight,” Phyllis Kovall said.
Jennifer Pletcher hopes to raise $10,000 at this Finley’s Fighters event.
“We started with four families last July. By developing the website, www.finleyfighters.com or www.rdh12.org and the RDH12 Foundation for Sight, five more families have found us: nine throughout the country and one in Europe, totaling 11 children,” she said. “They are all on board. We talk once a month on a teleconference to motivate us.”
The foundation’s goal is $250,000 by March so Bennett can begin safety studies. Last March, they gave Bennett and her researchers $70,000.
In addition to raising money for a cure, Jennifer Pletcher said, “One of our biggest goals is to get the word out about Finley’s diagnosis and RDH12 and inform families whose children are newly diagnosed.”
RDH12 causes progressive blindness. “Finley’s is going slower. She has a large pocket of central vision missing. With the gene therapy, they can save what she has. Her vision is 20/200, very fuzzy vision. That, they think they can improve, but the central pocket that she’s missing, is lost for good,” Jennifer Pletcher said.
While Finley will never be able to drive, “She will still see, she can go through life with the vision she has now. We’re told by Dr. Bennett, if all goes well, three to four years, ready for clinical trials in humans,” Jennifer Pletcher said.
“In order for this particular research to work, Finley and the other children need a minimum of live retinal cells,” Phyllis Kovall said. “Finley only has 10 percent retinal function, and we feel like we’re on a tightrope, but we’re hoping. By focusing on the fund-raising, that is one area that we can help. It helps the worry go away. Two years ago, we thought we were getting a sentence that she would never see, and now there’s hope.”
As Bennett’s research continues, it will cost millions, “Then bigger grants will pick her up,” Jennifer Pletcher said.
In a Penn Medicine article, Bennett thanked the families: “The efforts that these families are making to prevent their children from going blind are truly inspirational. The funds that they have so generously provided will be critical for developing the data in the laboratory showing that reversal of this condition is possible.”
To register for the event or to support Finley’s Fighters if unable to attend, make checks payable to RDH12 Fund for Sight and mail to Jennifer Pletcher, 1231 Sycamore St., Connellsville, PA 15425. For those who did not receive a form, log onto www.finleyfighters.com to get one.