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Fundraiser for blindness cure an eye opener for the sighted

March 31, 2013|By JENNIFER FITCH | waynesboro@herald-mail.com
  • Teagan Russ, 14, and her 11-year-old brother, Garrison Russ, are working with the Curing Retinal Blindness Foundation to fund research for the gene mutation that caused Teagan's blindness.
Submitted photo

WAYNESBORO, Pa. — An adventurous dining experience being offered May 5 in downtown Waynesboro is designed to open participants’ eyes to a gene mutation that causes blindness.

People buying tickets for the “Dining in the Dark” charity event are being asked to don blindfolds as they sample three courses of chef’s creations at Christine’s Cafe and Gourmet Coffee. Proceeds from the sale of the $70 tickets benefit the Curing Retinal Blindness Foundation.

Waynesboro Area Middle School student Teagan Russ does her studies in Braille and uses a cane because of blindness caused by Leber’s Congenital Amaurosis.

The 14-year-old’s mother is organizing Dining in the Dark. Melissa Russ described it as a unique experience and said the public feedback has been outstanding.

“They’re talking about how you take for granted how hard eating can be when you can’t see,” Melissa Russ said, saying not having a sense of sight makes a person more sensitive to food’s textures.

Christine’s Cafe’s owner, Sheree Green, said her staff volunteered to work the evening of the event. Those individuals are learning how to tell diners where items are on the table, using the points of a clock for reference.

“It’s really important they explain to each diner where their food is,” Green said.

Diners will know whether they are being served a chicken, beef or vegetarian entree. However, they will be asked to speculate about what that entree is based on their sense of taste.

As an experiment, Green said she and the restaurant’s chef sampled various colored peppers while blindfolded and could not identify them by taste.

Starting at 4 p.m. and preceding the dinner will be a wine-tasting from Tamanend Winery of Lancaster County, Pa. The winery maintains a line of wines that financially benefit several charities.

Georgia-based Pro Therapy Supplies donated spa-style blindfolds for use during Dining in the Dark.

The money raised for Curing Retinal Blindness Foundation goes directly to research for a cure, Melissa Russ said.

“Teagan has had this disease since she was born, but I’ve never done fundraising because I wasn’t sure before where the funds were going,” she said.

Kristin Smedley, whose family launched the foundation in May 2011, said a recent symposium allowed researchers to talk about figuring out the CRB1 gene and possible treatments. She said it was welcome news for people like her son, Michael, who is the same age as Teagan.

“They said maybe by the time he’s 50, they said there may be hope. ... There’s so much promise there,” Smedley said in a phone interview.

Smedley thanked the Russ family for its efforts.

“This is exactly what we need. We have the attention of the research community, and we’re finding CRB1 kids” worldwide, Smedley said.

There are an estimated 300 people with the CRB1 mutation in the United States, Smedley said. Research being done worldwide and databases of affected people across the globe are being consolidated to help researchers when the time comes to launch new programs, she said.

Smedley, who lives in the Philadelphia area, described a balance between telling the children they are perfect and nothing needs to be “fixed,” but also praying something comes along to improve their quality of life. Her own son helped her family find that balance, saying he enjoys playing center for his middle school football team but could possibly be quarterback if his sight were restored.

“I really want our community to know and embrace this, and be with us on this journey,” Melissa Russ said.

Tickets can be purchased at Christine’s Cafe, which can accommodate up to 80 diners for the event, or at www.dininginthedarkcc.org.

If you go ...
What: “Dining in the Dark” charity fundraiser
Who: Curing Retinal Blindness Foundation
Where: Christine’s Cafe and Gourmet Coffee, 81 W. Main St., Waynesboro, Pa.
When: 5 p.m., Sunday, May 5
For more information, call 717-977-1745

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