Meet Reece Anthony Rubino – a 13-year-old teen who loves video games, Disney World, and baseball.
At just 3 months old, he was diagnosed with Type 1 spinal muscular atrophy (aka Werdnig-Hoffmann Disease). Since then his family, friends, and community have done what they could to help him lead a normal, fulfilling life.
Let’s help Reece do just that!
What is Werdnig-Hoffmann Disease/SMA?
Spinal muscular atrophy (SMA) is a rare genetic disorder that causes mild to severe muscle weakness and degeneration. The types of spinal muscular atrophy vary, based on severity and age the condition was developed.
SMA Type I — also known as Werdnig-Hoffman disease — is the most common form SMA. A severe type diagnosed at or soon after birth, Werdnig-Hoffman disease causes developmental delay and inability to sit or support the head independently. It also causes breathing and swallowing issues.
So what can we do?
The 12th annual Reece’s Round-Up East Coast — a 5K run/1-mile walk — is July 20.
For those of you in the Beaver, PA area, registration begins at 8:15 a.m. at the Gazebo in Irvine Park on Third Street. The race starts at 9 a.m. Strollers and pets are welcome.
For those unable to participate in the race but still want to contribute to the benefit, you can mail a check, payable to Reece Anthony Benefit Fund, to Nancy Kelly, 2000 Alameda Drive, Aliquippa, PA 15001.
While Reece won’t be able to be at the race, brother J.P. will attend in his stead. Plus, organizers will set up a big screen and computer in the gazebo, where race participants can FaceTime with Reece and his parents.
Says Reece’s father, Jeff:
“Anything that can help us fight this disease and make his life as normal as we can we are indebted forever to any people that help.”
And please pass along to anyone who might be interested in participating! Let’s show our support!