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Help make Rett cure a reality

By Mark, Jen and Sarah Dalton

September 21, 2011
Adirondack Daily Enterprise

As we approach October, Rett syndrome awareness month is once again upon us. Rett syndrome is a neurological disorder affecting mostly girls. Girls with Rett are often unable to walk, talk or effectively use their hands. Many also suffer from a variety of other issues such as seizure disorders, problems with eating, and both gross and fine motor control.

The third annual Rockin' for Rett, in honor of our daughter, Emma, will be taking place on Saturday, Sept. 24 from 11:30 a.m. till roughly 6:30 p.m. at Tucker Farms on the Hobart Road in Gabriels. Admission will be $5 for adults and $2 for children 8 and under. All proceeds from the event will go to support research for a cure by way of Girl Power 2 Cure, the Rett Syndrome Research Trust, and the Rett Clinic at Montfiore Children's Hospital in the Bronx.

For the past decade, scientists around the world have been working to find effective treatments for the disorder, with the ultimate goal of a cure. In 2007, a doctor in Edinburgh, Scotland was able to completely reverse all symptoms of Rett Syndrome in laboratory mice. The race now is to find safe and effective methods of delivering treatments. In the past year, a number of new scientists have come on board, and there is real, tangible hope that a cure could be as little as five years away. We cannot adequately express the feeling, as parents, of knowing that within a few years we could have the chance to finally help teach our daughter to walk and have our first conversation with her.

But just like so many things in life, it all depends on funding. Because it is a relatively rare disorder, it has not gotten the government research funds or attention of other disorders. Instead, the lion's share of money that has gone into research has been privately raised by families and friends. We have been working hard to do our part to raise awareness and funds, and we are so thankful to everyone who has helped us. Through their help, we have raised more than $44,000 in Emma's name in the past two years, which is amazing and humbling. We hope to keep that momentum going with this year's event.

Once again we have a lineup of some fantastic bands from all over the North Country that will be starting to play at noon. We'll be featuring Phil Henry, Steve Borst, Austin Larabie, Urban Fetch, Majors, Bees Kneez and the Pine Ridge Rounders. If you don't come for anything else, for $5 you'll get to hear some great music.

We have dozens of generously donated items again, some of which we will be doing a silent auction for and some raffled, including an iPod Touch, a package of just about everything you'd need to go camping (including the tent), a full set of Craftsman mechanic's tools, an American Girl doll, original artwork from North Country artists, a special-edition Wii package and much more.

The drawings and silent auction announcements will take place at 5:30 p.m., though you don't need to be present to win.

Anyone arriving between 11:30 a.m. and noon will automatically be entered for in a drawing for a $100 gift certificate for Casa del Sol, a restaurant very popular with the locals in Saranac Lake, at noon. Arriving at any time will also make you eligible for drawings for a number of other items we will be doing between each the bands' sets. You will need to be present for these drawings.

Food will be available from North Country Kettle Corn, the Knights of Columbus and the Dancing Dog.

There will be a bouncey house and face painting available for the kids.

There will be a huge selection of baked goods for sale and a pie auction that will take place at 1:30 p.m.

We would be grateful if you had the time and were able to join us, and our families, the Cheneys and the Daltons this Saturday. Our cure is close. Will you be part of it?

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Mark, Jen and Sarah Dalton live in Paul Smiths.

 
 

 

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