NEW ORLEANS– This week, Sidney Torres will donate $1 to CureDuchenne and Team Gleason for every tweet with #TheDeed during the season
finale of his hit show.
Both organizations are dear to him as they represent two diseases considered incurable that have affected people close to him. Sidney deeply understands
how fortunate he is to be healthy and his show, ‘The Deed’, doing so well that he wants
to pay it forward.
#TheDeed has trended in top 10 in the U.S. week after week on Twitter and Sidney wanted to take this opportunity to relevate the awareness of both
diseases, while also raising money. Both Duchenne Muscular Dystrophy and ALS affect the person’s ability to move and causes paralysis.
Duchenne affects people at a very young age while ALS most often appears later in life, but can affect anyone at any age. Sidney has a family member with
Duchenne and he’s witnessed how destructive the disease can be. His cousin, Tiffany’s Cook’s son, Wil, was diagnosed with the disease at 7.
“Tiffany is a sister to me and to know the hardship and stress this disease has put on their family is devastating.
Many of us take our health and ability to get out of bed every day for granted. Most boys, like Wil, do not survive beyond their mid-twenties, and those
that do will be using a wheelchair and experience social isolation. Duchenne is a genetic disease carried from my grandmother to my aunt to my cousin. I hope by bringing awareness this will encourage others to be more aware of their genetics. We are in a race against time and these two incurable diseases need more exposure and more resources to ultimately find a cure,” says Sidney. “ Just like Steve Gleason, Wil has the most positive outlook on life. They teach me how to live.”
Sidney hopes with this national exposure and through his personal ties, he can have a continued impact on these diseases through his work with the two organizations.
“I always quote what Lenny Kravitz wrote for the funeral of my cousin, Tony (Sidney’s brother), ‘ THIS MOMENT IS ALL THERE IS’. That’s all we have. I am so grateful Wil is so positive and we focus on the things he can do,” says Tiffany Cook. “Wil met Steve Gleason a year ago. We all still talk about that day. It’s great to connect with people going through something so similar and to know we are not alone.”
“Meeting Wil was a great experience. He was full of questions about how I do things with my chair and how to get around better. He is not stopping. Team Gleason is grateful for all donations that help us continue to support individuals with ALS to live a more purposeful life,” says Steve Gleason. “I hope to see you all on twitter on Wednesday night!”
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Team Gleason aims to provide individuals with ALS with leading edge technology, equipment and services, to create a global conversation about ALS, and to raise public awareness towards ALS by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries.
Duchenne affects about one in 5,000 boys in the U.S. The condition is incurable, and the average life expectancy is in the late 20s. In later stages the condition leads to decreased heart function, a weakened diaphragm requiring the use of a ventilator and loss of muscle mass. CureDuchenne is recognized as the global leader in research, patient care and innovation for improving and extending the lives of children with
For more information about “The Deed,” click HERE.
For more information about Team Gleason, click HERE.
For more information about Cure Duchenne, click HERE.
The season finale of “The Deed” airs on CNBC at 10/9 central on Wednesday, July 25th.