Local organizations that help people suffering from neuromuscular diseases will benefit from a video posted by a Rochester area woman. A foundation run by Madonna is granting the money after they reviewed a one minute video.

The video was posted by someone in the WXXI family. It’s Joy Parker, our web coordinator, who was diagnosed with ALS, also known as Lou Gehrig’s disease in April of 2010, when she was just 39 years old. Parker submitted the video to Madonna’s Art for Freedom project, which promotes art and free speech.

A spokesperson with Madonna’s Ray of Light Foundation says Parker’s video was picked among all of the others submitted in December. In the video, Joy had a simple, yet powerful explanation for what freedom means to her.

“Freedom is still being alive so I can take care of my daughter, freedom is still being able to express myself.”

As a result of being selected by the foundation, $10,000 goes to a nonprofit organization of Joy’s choosing, and in this case, it will be shared by the Greater Rochester Muscular Dystrophy Association and the Upstate ALS chapter.

Sally Cramer is Director of Business Development for the local MDA. She has known Joy ever since she was diagnosed, and has always been impressed by her spirit.

“Even though she’s affected every day of our life, not just Joy, but her entire family, but she still has that, ‘I’m going to get out there and make a difference.”

Joy Parker continues to work from home, and as she said in the video, ‘freedom means everything .’