Fun night for family hit by SMA

By Natalie Rubino
By Matt Hicks

July 19, 2013 Updated Jul 19, 2013 at 10:45 PM EST

Town of Fenton, NY (WBNG Binghamton) Plenty of people were out enjoying the weather at Chenango Valley High School Friday evening, and it was all to support a local family dealing with a difficult diagnosis for their two young sons.

Last last year, 3-year-old Kalen Kulas and 2-year-old Kyan Kulas were diagnosed with spinal muscular atrophy.

It's a terminal genetic disorder that wears down the connections between the nerves and muscles of the body. There is currently no cure.

Family friends organized the fun night out after seeing a flier for another benefit.

"The majority of our activities were all done through donations, so 100 percent of the profits will go to the family to help them," said organizer Jennifer Blewett.

The boys' mother, Sierra Kulas, said goal right now is to make life as normal as possible for the boys.

"There's a lot of hope that this disease will have a viable treatment in the next few years and we pray for that every day."

For more information about the family and how you can help, visit www.kureforkulas.com

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