The Akian family of Summit will be hosting their third annual charitable fundraiser, Ride 4 Avi: A Tour to Cure on Sunday, Sept. 23, in honor of their 10-year-old son, Avedis; who is affected by an ultra rare, progressive disorder called ataxia telangiectasia (A-T).
The days activities include a state police escorted motorcycle ride followed by a Family Fun Day. Riders can register from 10-11 a.m. at the Knights of Columbus, Shunpike Road in Summit. Motorcyclists will enjoy a light continental breakfast followed by a 60-mile ride of some of New Jerseys most scenic countryside. The Family Fun Day will take place at the Knights of Columbus from noon3 p.m. Tax deductible donations are $20/rider, $10/adult, and $5/child.
Admission includes a BBQ lunch and live entertainment by the Mudbelly Blues Band. A la carte childrens activities include inflatables, face painting, art and crafts, raffles, fall-themed activities, carnival games and treats. All donations from the days events will benefit the A-T Childrens Project, a non-profit organization committed to funding first rate research centered around finding a life saving treatment or cure for A-T.
Avedis, a student at Jefferson School, was diagnosed with A-T in 2009 after a seemingly healthy early childhood. Ataxia Telangiectasia is a rare, genetic disease; that affects only 470 kids in the U.S. Children with A-T lack the ATM gene, which provides instructions for making A-T protein. The protein helps control the rate at which cells grow, divide and repair themselves after injury which is a daily occurrence. The ATM protein also plays an important role in regulating the nervous and immune systems. A-T, in and of itself is not a fatal disease, it is the consequences of the lack of protein that predispose the affected to life threatening cancers, compromised immune systems and atrophy of the cerebellum, that leads to overall loss of coordination. There is no known treatment or cure.
Children with A-T are usually unable to walk by the age of ten and slowly lose their abilities to control movements to read, write, speak, chew and swallow. Those with A-T maintain normal to above normal intelligence and are keenly aware that they are becoming trapped inside a body that no longer works. Although Avedis has significant disabilities on the exterior, he is like every other boy his age on the inside and enjoys boy scouts, roller coasters, playing Wii and watching classic cartoons. Avi would like to grow up to be a chef and own a motorcycle.
Due to the fact that research funds are limited, grassroots fundraising, like this event are essential to fund the private research that is being conducted on A-T, including a promising study done at Rutgers University that has shown the ability to stop the progression of the disease in mice. Avedis and his family have raised $30,000 over the past two years and are hoping to achieve $50,000 this year. For more information about the days activities log on to ride4avi.com.
More:
'Ride 4 Avi' motorcycle ride and fundraiser held in Summit on Sept. 23