In July, our casual Fridays benefited Working on Walking. Our employees donated $190 and the agency matched it for a total $380 towards this very worthwhile cause.
Working on Walking is a non-profit dedicated to supporting efforts related to the disease Spinal Muscular Atrophy (SMA). This disease affects the motor nerve cells in the spinal cord and leads to debilitating and sometimes fatal muscle weakness.
Normally, healthy motor neurons send messages to the body’s muscles to tell them when and how to move. SMA damages these cells and prevents messages from reaching the muscles. When this happens, they’re inactive, shrink, and start to waste away.
The muscles most affected are closest to the center of the body, such as the shoulders, hips, thighs and upper back; however it can affect other areas too. SMA patients may lose their ability to walk, eat, or breathe, but it does not affect brain function, senses, or emotions.
SMA affects 1 in 10,000 babies of any race or gender and the disease affects youngest children the most. It is the top genetic cause of death in infants. However, SMA can also affect teens or adults, but with less motor impairment.
At this moment, no cure exists for SMA, but there’s hope. Researchers have identified the gene mutation that causes a protein deficiency that affects these patient’s motor neurons. Today, the focus is on effective therapies and strategies to increase the body’s production of the motor neuron protein, SMN. Despite their limitations, many SMA patients cope through physical therapy and treatment of their most troubling symptoms. However, patients and their families need ongoing support.
Working on Walking plays an integral role. An SMA patient, Alyssa Silva, coined to name of the organization when she was ten years old. She raised money by selling lemonade and her first goal was $100. Nonetheless, Alyssa realized she would have to do more to make an impact. She branched out and tried new ventures. After twenty years, donations surpassed $150,000 through her many efforts.
A documentary of Alyssa’s remarkable life offers viewers a glimpse into the life of an SMA patient and it inspires people to push themselves beyond their boundaries. It’s used as an educational tool for those who want to know more about SMA, and it is invaluable for families with newly diagnosed children. The Dare to be Remarkable video is part of the Rhode Island International Film Festival this August if you would like to attend a screening.
Today, Working on Walking continues to raise funds, cultivates awareness, and supports patients so they can lead a rewarding life, despite the disease. Their ultimate goal is to find a cure for SMA.
One major fundraiser is their annual golf tournament and dinner. Funds raised go towards research for a cure. This year it takes place on August 8th, during National SMA Awareness Month. The tournament is open to the public. If you cannot attend, you can always contribute to this worthwhile cause through their fundraising page or Amazon Smile.