Rare Disease Event:
One man ran across the United States to help children with Batten disease.
Will you drive across town to help?
Please join us on May 5 at the annual benefit to help the five Chicagoland children who are bravely fighting Batten disease. Called “A Fifth Season…Brightening the Landscape of Batten Disease,” the event will raise funds to support research for a cure for this ruthless, terrible disease.
A casual gala for a serious cause, the event will be held on Saturday, May 5, 2012, at 5:00 p.m. at the Cotillion Banquets in Palatine, Illinois. Offering a big benefit experience with a relaxed atmosphere, the Fifth Season fundraiser gala will feature festive fiesta fun, Cinco de Mayo themed margaritas, fantastic live music, special guest appearances, thrilling live and silent auctions, and an extensive appetizer, dessert, and open bar.
The five Chicagoland children who are honored at the gala are fighting Late Infantile Batten Disease, an extremely rare, degenerative genetic disease. For the first few years, the kids developed normally, toddling, talking, and laughing like any other kids. Jasper (7) loved to explore…Bridget (7) always wanted to go-go-go…Ethan (7) had a passion for cars, trucks, and planes…Noah (7) loved playing with trains…and his sister Laine (6) adored dressing up like a princess.
Unfortunately, everything changed quickly. Between the ages of two and five, the children began to lose muscle coordination and experience seizures. Within a few years, they began losing their ability to speak, walk, and feed themselves as their little bodies slowly shut down. Some of these five children are now fed with feeding tubes, and are in wheelchairs. Most can no longer speak. At this time, Batten disease is terminal between the ages of 8 and 12.
If only there were more hours in the day, or a fifth season in the year, we would have more time to find a cure. And we would have more time for each of these special children to experience a childhood before Batten disease ruthlessly rips it away.
It is time to find a cure. It is our turn to help.
Dress for the event is casual. The cause is absolutely critical.
Please bring your friends, tell your neighbors, and spread the word about the Fifth Season event on Saturday, May 5, 2012. Together, we can help to find a cure.
To purchase tickets or to make a donation please visit: Tickets
If you or someone you know is interested in becoming a sponsor for this event please see the info below, or contact Annie at 630-746-2507 or AFifthSeason5@yahoo.com
360 Creekside Drive
Palatine, IL 60074
The Global Genes Project and R.A.R.E. Project
Providing Awareness and Education
About Batten Disease