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Campbell Hall, NY
Another year, another gathering for Rett Syndrome research. Parents Aimee and Albert Fini held their annual fundraising event on July 13th, An Evaning of Hope, for their daughter Eva and other young girls who struggle with Rett Syndrome each day. With over 500 people in attendance, local businesses and community members across New York State gathered to hold an Eva-ning of hope to find a cure for Rett Syndrome.
Smokers Choice was in attendance of the event and donated $5,000 to the Rett Syndrome Research Trust, along with a gift basket to be auctioned for additional funds. Over $200,000 was raised that night, with donations still coming in from friends of the Fini family. “Community support is really important to us,” says Smokers Choice CEO Doug Nolan. “Rett Syndrome is a disorder that hits close to home, so it’s crucial that we contribute to finding a cure.”
Eva can not speak, but despite her challenges her sisters say she communicates in her own way with a brush of the arm or her dancing eyes. Attendees sat there in awe while the Fini family showed signs of strength and persistence to find a cure for this debilitating disease.
Rett Syndrome only affects girls. It’s considered an autism spectrum disorder, and little was known about it until recent research efforts. It targets young girls who have developed normally until about 18 months old when they suddenly start to regress, sometimes losing the ability to talk, move, and breathe without assistance. Eva is one of the lucky ones who still has the ability to carry out some of her favorite activities, like horseback riding and giving her family tons of hugs and kisses.
Rett researchers have already made progress with potential treatments and have even reversed symptoms in a study on mice. The cure for Rett Syndrome is close, but without support from Eva’s community, none of this would be possible.
The Eva Fini Fund is fundraising to benefit the Rett Syndrome Research Trust, which consists of a small team of researchers trying to find a cure. The most promising treatments include gene therapy, where an extra copy of the identified damaged gene (MeCP2 protein on the X-chromosome) can be awakened causing the disorder to disappear.
If you’d like to make a donation to the Rett Syndrome Research Trust, please visit https://www.reverserett.org
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