‘Team Saij – Simply The Best’

Fundraiser supports Duchenne Muscular Dystrophy research.

"The decision was made from the heart, coupled with the will of a mother to do whatever it takes for her child," wrote Vicky Singh in her letter to friends asking for support and pledges. Vicky Singh’s decision was to run the New York City Marathon.

The passion that led to her decision was to raise funds for research for Duchenne Muscular Dystrophy (DMD), the most common and most debilitating form of muscular dystrophy. According to Parent Project Muscular Dystrophy (PPMD), DMD afflicts 1 in 3,500 boys worldwide. This disease is progressive and lethal. Boys are usually diagnosed between the ages of 1 and 7. Most require a wheelchair by the time they are 10 – 13, lose control of their hands by late teens and few live beyond their 20s. There is no treatment or cure. The U.S. government does not fund a lot of research, since less than 20,000 boys have the disease — yet it is the leading cause of death in boys under 25, according to statistics at www.parentprojectmd.org.

Saij Singh, son of Vicky and Gurpreet Singh of Potomac was diagnosed with DMD in 2008 when he was 6 years old. He is now 9 years old — and in a wheelchair. His mother describes him: "Saij is so full of life. He is cheerful, cheeky — and very bright. He is two grade levels ahead in school and is optimistic, enthusiastic and loves to play Wii, chess and X-Box 360. Because he cannot walk, he dreams of flying — and of one day being President."

Vicky Singh had never run before — in fact, she had never even walked a mile around her neighborhood when she decided to enter the race. She chose the NYC Marathon because most of her family lived in New York City and because PPMD encourages parents to join this run to "Run for Our Sons," to raise money for research for Muscular Dystrophy. Singh decided to run and immediately two of her sister-in-laws and her best friend from childhood registered. Her brother Lucky asked, "What are you thinking? This is the NYC Marathon. People train for years."

She trained — but only a few miles when she could find time. But because of her determination, love for her son, and drive to find a cure or treatment for this devastating affliction, she completed the 26.2 miles — and the biggest challenge of her life. After the race, she wrote, "It was never a life ambition nor was it even a possibility for me to run a marathon. However, by completing it, my lesson learned is, that if I could do this and it wasn’t even a desire, then imagine what is possible for what I do strive for in my life."

She raised over $17,000 during the Marathon, and then founded the "Team Saij-Simply the Best" — a non-profit 503c Foundation. The foundation’s primary goal is to fund research and accelerate "time to market" of treatment for Duchenne boys. "Simply the Best" comes from the Tina Turner song which she and Saij sing to one another for hope and inspiration.

Gurpreet Singh added, "Team Saij is inspired by several leaders in the world of DMD. Especially worthy of mention are Pat Furlong, founder and CEO of PPMD. Pat is one of the most selfless and passionate leaders I have ever had the opportunity to meet — she is a real force and has contributed substantially to the world of DMD. Dr. Kathryn Wagner of Kennedy Krieger and Dr. Lee Sweeney of University of Pennsylvania are two other pioneers who have a strong commitment to ending Duchenne, and are instrumental to advancements in research and standards of care for boys with Duchenne. I am so inspired by them several others whom I have had the opportunity to meet with over the last few months."

Just a few weeks ago, Vicky Singh had the idea to host Team Saij’s first DMD fundraiser dinner event, in addition to organizing the "Sensitivity Awareness Week" program event at the Wayside Elementary School. Saij is a student at Wayside. "At this late date we were very fortunate to be able to book the Marriott at Rio and to be supported by people like Michelle Pajot, general manager of the hotel. She has been exceptional to work with to make the event a success so more funds can go towards this important research," said Singh.

The DMD fundraiser event will be Wednesday, Sept. 21 from 6:30 – 9:30 p.m. at the Gaithersburg Marriott Rio, 9751 Washingtonian Boulevard, Gaithersburg. It will include dinner, a talk by inspirational and motivational speaker Jeremy Newman who is flying in from L.A. for this event, and the "best ever" silent auction. Tickets are $100 for adults, $175 for couples and $50 for students.

Tickets are tax deductible and can be purchased at the door or in advance from the Singhs at [email protected]. Donations for the foundation can be sent to 12520 Grey Fox Lane, Potomac, MD 20850. Checks should be made out to "Team Saij-Simply the Best." Email for more information or to donate items for the silent auction.