Chick-fil-A Bristow is throwing a FUNdraising end of the year party to support Eme’s Curing Retinal Blindness Fund, because this is a disease that hits close to home.
Emerie Mitchell-Butler, better known as “Eme,” is a graduating kindergartener at Nokesville Elementary School. She is rapidly losing her vision due to a rare disease known as Leber’s Congenital Amaurosis (LCA.) She is 5 and she is already blind. She walks with a white cane and is learning to read & write with Braille.
LCA is caused by a genetic mutation and is the most aggressive degenerative retinal disease in the Retinitis Pigmentosa (RP) family. Eme’s form of LCA is caused by a mutation of her CRB1 gene. Experts suspect there are only about 300 people in the US with CRB1-LCA. According to the Curing Retinal Blindness Foundation (CRB1.org) while there is currently no treatment for this severe form of the CRB1-LCA disease, there is hope due to progressive gene therapy. Today researchers expect that current work on CRB1 can lead to clinical trials in the near future.
The Curing Retinal Blindness Foundation was founded by a group of families who came together from across the US to fund research for CRB1-LCA, so their children could be treated and cured. Because CRB1-LCA is such a rare disease, these parents realized it would not receive much attention or funding from researchers, unless they could provide those funds and keep CRB1-LCA on the radar.
With that collective goal, parents, relatives and friends work tirelessly in their communities and through their network to make these children’s dreams a reality. While they raise money to Cure Retinal Blindness, they also make sure their blind children are living full, active lives, involved in their community, school, sports and activities with friends. And each child has his or her own story.
Emerie is the youngest of five children. As an infant she had eyes that would not focus, she began to fall off her growth chart, and she displayed other classic degenerative symptoms, thus her parents feared she might have a life-threatening disease. As time progressed, every specialist came up with nothing and Eme was placed in glasses. Even with her cute purple glasses, her parents realized there were many things that Eme could not see.
When Eme was 3½ , she was diagnosed with LCA at the National Institutes of Health. At that point it was hopeful news for mom and dad, because a certain type of LCA was being treated in Philadelphia, which meant there was hope that Eme’s vision could also be treated. Emerie was confirmed by genetic testing to have CRB1-LCA, a form of LCA with no treatment.
Yet the Mitchell-Butler family did not give up. They met other parents and formed the CRB1.org website and set-up the Curing Retinal Blindness Fund (CRB1 Fund), a 501(c)(3) charitable fund. They have reached out to find the 300 CRB1 families in the US, and are now 12 families strong! These CRB1 families have organized into the Curing Retinal Blindness Foundation and now CRB1 families across the nation are FUNdraising for the Curing Retinal Blindness Fund (CRB1 Fund).
Eme’s family began to mobilize their friends, family, neighbors and community members. Eme’s supporters & volunteers have become known as EmesArmy because, according to Mitchell they are literally in a fight against time to save her sight, and every aspect of contributions help. If too many of Eme’s retinal cells die, a gene therapy treatment will not work for her. They build EmesArmy as they team up with local businesses and organizations, and raise money for research that can treat and cure CRB1-LCA.
One business that has been gracious in promoting worthwhile causes is Chick-fil-a. Mike Lovitt, owner of the Bristow Chick-fil-a, has been active in promoting children’s charities, such as St. Baldrick’s Foundation, which supports children with cancer. Lovitt was even recognized last night by the Prince William County School Board for all the good work he has done for the community.
As Friday is the last day of school it should be fun, and Chick-fil-a Bristow has and event that will surely be entertaining for children, which everything from pirates to Chipmunks to moon bounces. However when parents take their children to this event, they will also be supporting a meaningful cause.
During their Year End Party, Chick-fil-a Bristow will donate 15 percent of sales to Eme’s Curing Retinal Blindness Fund. They need folks to present the flyer, or to ask for one to support Eme when they make their purchases at the counter.
All FUN things are free. There will be a moon bounce, which should be set up by 1 p.m. The Blue Eye Pirate will be there, giving out tattoo, and engaging in very safe sword fighting with the kids. Chick-fil-a will also have DJ MeanGene spinning some island tunes throughout the day as parents and children get ready for the movie “Chip-wrecked,” starring Alvin and the Chipmunks at dusk.
According to Eme’s mother, Tabatha Mitchell, she will have EmesArmy.org items such as Braille shirts, key-chains and necklace, which is timely as Eme just won a National Braille Competition, which Tabatha attributes to the hard work of Eme’s teachers in the PWC Vision Dept of the Spec Ed Dept & Nokesville Elementary.
EmesArmy.org will also be selling theme items such as pirate bandanas, Chipmunk glasses. They are all available for nominal donations that will go to Eme’s Curing Retinal Blindness Fund.
EmesArmy.org along with PWCMom will be conducting a raffle during the event and will feature tickets to the International Spy Museum, the National Crime Museum, Target gift cards, and themed baskets donated by Eme’s supporters. You can contact Tabatha, Eme’s mom if you are interested in making raffle donations at EmesArmy@CRB1.org.
EmesArmy.org will also have information about Eme’s very rare blinding disease and their journey towards forming the Curing Retinal Blindness Fund to support research to find the cure for the CRB1 kids.
More details about Retinal Blindness and how individuals can help find a cure can be found on the CRB1.org site and EmesArmy.org Website and EmesArmy.org Facebook Page.
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