From the Associated Press:
On Sunday, September 26, 2010 the Akian family of Summit, NJ will be hosting our first charitable fundraiser entitled Ride 4 Avi: Motorcycle Tour and Family Fun Day in honor of our eight year old son, Avedis. Avedis is affected by a rare progressive, neurodegenerative disease called ataxia telangiectasia (A-T). A-T has been likened to having cerebral palsy, cystic fibrosis, muscular dystrophy, cancer and immune deficiency all rolled into one.
The event will take place at the Springfield Columbian Club Hall from 9am until 2pm. The Columbian Club Hall is located at Harvard Streets and Shunpike Road in Summit, NJ. All donations from the day’s events will benefit the Ataxia Telangiectasia Children’s Project, a non-profit 501 (c) 3 organization, whose mission is to fund first rate biomedical research in the hope of finding a cure for A-T.
The day’s events will feature a guided motorcycle run. Riders can register from 9am-10am, with a 1.5 hour ride following. Family fun activities will begin at 11am and include juggling, magic, face painting, temporary tattoos, spin art, crafts, performances by the Blackberry Blues Band and some local musicians. Donations are $20 riders, $10 adults, $5 children (3-12). Donations are tax deductible to the fullest extent of the laws and include a barbeque lunch.
A-T is a rare, genetic disease; that affects only about 500 kids/young adults in the U.S. A-T attacks in early childhood; after a healthy, normal infancy and toddlerhood; it progressively affects coordination, predisposes children to deadly cancers, and severely compromises their immune systems. Children with A-T are usually unable to walk by the age of ten and many children suffer life threatening infections and illness in their teenage years. Children with A-T maintain normal to above normal intelligence and are trapped inside a body that no longer works.
Sadly, A-T is what is termed an “orphan disease.” It has not been adopted by the pharmaceutical industry because there is little financial incentive in finding a treatment or cure for so few children. Privately funded A-T research is rapidly progressing though toward a cure for this devastating disease. Finding a cure for A-T is also thought to make a positive impact on finding cures for other more prevalent disease such as Parkinson’s disease, Alzheimer’s, immune diseases and cancer.
For more information log on to www.ride4avi.com
