The Akian family of Summit will host the 4th Annual Ride-4-Avi Motorcycle Ride and Community Barbeque on Sunday in honor of their son, Avedis, 11, who is battling ataxia telangiectasia or A-T, a progressive neurodegenerative disease.
The Lawton C. Johnson Middle School student was diagnosed with A-T in 2009 following a seemingly healthy early childhood. A-T is a rare, genetic disease that affects only 470 kids in the U.S, according to the Akian family.
Children affected by A-T are usually unable to walk by the age of 10 and slowly lose their abilities to control movements, to read, write, speak, chew and swallow. Although Avedis has significant disabilities on the exterior, his family said he doesn’t allow A-T to stand in his way of living life to its fullest; on the inside he thinks like every other boy his age enjoying boy scouts, roller coasters, Wii and watching classic cartoons. He dreams of growing up to be a chef and owning a motorcycle, the family explained.
The event, beginning at 10 a.m. with motorcycle registration and a continental breakfast, will take place at the Knights of Columbus on Shunpike Road in Summit. The 60-mile tour of New Jersey’s scenic countryside, escorted by the New Jersey State Police, will begin at 11:15 a.m. followed by awards for “best in” categories.
At noon, the community is invited to a barbeque, complete with a live musical concert by the Mudbelly Blues Band, carnival games, treats, moonbounces, arts and crafts, face painting and raffles.
Over the past three years, Ride-4-Avi has raised over $65,000 for A-T research. Because research funds are limited, grassroots efforts are essential to funding ongoing private research.
The Akians explained that this year’s event will help advance the study of three newly-approved clinical trials including: a drug to slow the progression of the disease, bone marrow transplants to correct the immune disorder, and gene therapy to correct or bypass the defective A-T gene, which the family believes offer the greatest hope yet for a treatment or cure.
For more info on Ride-4-Avi, visit www.ride4avi.com.