Adam and Lindsey Allen’s daughter, Sofia, suffers from Autosomal Dominant Optic Atrophy, a form of pediatric blindness. It is because of this that the Autosomal Dominant Optic Atrophy Association (ADOAA) was created to raise awareness about ADOA and to help fund medical research to find a cure. It is this organization that is to be the beneficiary of a unique fundraiser called “March-A-Palooza” to be held this Friday, March 13, at the Genetti Hotel from 6 to 11 p.m.
This event will be a night of great live music from some of the area’s leading bands and also includes free food, a silent auction, raffles various door prizes and a cash bar.
“Our daughter, Sofia, was diagnosed with ADOA in 2012 when she was three years old. ADOA is a rare pediatric disease (affects 1 in 50,000) that deteriorates the optic nerve (typically before the age of 15), causing mild to severe vision loss. In most cases, children become legally blind, and some may lose their vision completely,” Lindsey Allen told Webb Weekly. In fact, 20 percent of all children diagnosed will also experience muscle atrophy and/or nerve damage throughout other areas of the body. Currently, there is no treatment, cure, preventative measures, or proper funding for the research for a cure for ADOA. After years of searching for answers and guidance from doctors about what our next steps should be, we decided to start the ADOA Association. Our mission is to connect everyone affected by ADOA by providing a place to find useful information and answers relating to this condition. We hope to help every family living with ADOA find the answers they are looking for and to join together to ultimately help fund the medical research for a cure.”
Lindsey continued, “We found out Sofia was legally blind when she was three years old, which means she navigates this world differently than most people. However, she does it with tremendous courage and grace every single day, and we couldn’t be prouder of her!”
She added, “I’ve never experienced anything scarier than when I heard my daughter had lost most of her sight, and there was nothing we could do about it. But, with the love and support that we have received from our family and others dealing with the same diagnosis, it gives me great hope that by working together, we will find a cure!”
The musical groups scheduled to perform are Rocky Allen, Family Ties, Dixie Chicken, Noah Caputo, and Grey Valley.
Tickets for March-A-Palooza are $20, children 12 and under are free. You can purchase tickets online at http://www.adoaa.org or pay at the door.
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