A New York mom’s passion for helping her daughter (who was diagnosed with a rare disorder) and others like her has created an event on May 7 that has evolved over the years from a modest walk to a full-blown carnival at the 79th Street Boat Basin.
Melissa Felsher’s daughter, Josie, has Williams Syndrome, a developmental disorder that affects many parts of the body. It is caused by the deletion of genetic material from a specific chromosome region (short arm of chromosome 7), resulting in the loss of 26 to 28 genes. Although this is a small percentage of genes in the human genome, this small loss can affect physical, behavioral, and cognitive makeup. The loss of these genes is the assumed cause of characteristic features of individuals with Williams Syndrome. The severity of symptoms varies case by case, but some of the difficulties affecting those with Williams Syndrome include (but are not limited to):
• Developmental delay
• Mild to moderate learning disability
• Unique personality
• Cardiovascular problems
This rare disease affects one in 10,000 individuals worldwide, with no predominance in one gender or culture. There are approximately 20,000 cases in the United States alone. Children diagnosed with Williams Syndrome endure costly, ongoing medical care because of the numerous hurdles they face throughout their physical and cognitive development. However, socially, children with Williams Syndrome are often quite verbal, friendly, and endearing.
The Williams Syndrome Association is an organization that has sprouted to provide essential resources for parents of children diagnosed with Williams Syndrome, including connecting all the families affected by the disease.
“Our family and all those directly impacted by a diagnosis of Williams Syndrome don’t know where we would be without this invaluable organization,” said Felsher. “Josie was diagnosed in November 2007 at 3 months old. In July 2008, my family and I flew to California to attend our first national Williams Syndrome Association convention. I was hooked, and that Fall, I was nominated by someone I had met there to serve on the Board of Trustees. I served two consecutive three-year terms which is the maximum.”
The association manages a registry of individuals with Williams Syndrome to spur research, and it lists local services and community events. It relies on awareness events, and Felsher’s yearly New York event has been particularly successful.
“In 2010, the WSA started the first-ever Williams Syndrome Awareness month to be held each May. The goal was to get volunteers across the country to hold an awareness and fund-raising event. I volunteered to run and organize the New York City event. I have continued each year since,” Felsher said.
Her Family Fun Day allows families and their friends to enjoy each other, learn more about the disorder, and raise money for the Williams Syndrome Association.
“It started with a Walk For Williams, which was held in Battery Park along the esplanade. It was a wonderful venue, but after five years, we outgrew the space, so I searched for a new location for the 2015 event.
“I came across the 79th Street Boat Basin, which is a gorgeous spot and can hold up to 1,000 people. Because of the layout of the space, I came up with the idea of a Family Fun Day and Carnival,” said Felsher, who has lined up carnival games, a DJ, a magician, and more for the May 7 event.
“We get a lot of children — about 200 or so — so it seemed like a perfect fit,” said Felsher.
And the carnival is a hit that keeps on growing.
“[The New York City] event has steadily grown over seven years. The people at [the 79th Street Boat Basin] are incredible to work with. At my first event in 2010, we had around 125 attendees, and it has steadily grown to over 600 people in recent years,” stated Felsher. “We also have grown in terms of fund-raising from about $50,000 the first year to over $100,000!” she added.
“Josie loves ‘her carnival’ and before that ‘her walk!’ She knows, though, that we do it for Williams Syndrome and many other ‘Williams Syndrome families’ attend. Josie looks forward to seeing her many friends, who we only see a few times a year, either at our event, another held on Long Island, or the national conventions held every other summer in a different part of the country.
“Josie loves to see our friend Carolyn who has generously volunteered each year to do face painting and our friends from the Craft Studio who volunteer staff and a craft each year. The support is incredible!” said Felsher.
There are numerous research projects that the Williams Syndrome Association helps to fund. The research is critical in order to understand more about individuals affected by the disease. Key cognitive research is happening at the University of Louisville and has been underway for more than 20 years. Dr. Carolyn B. Mervis and her research is just one valuable resource for Williams Syndrome families. Unfortunately, there is a lack of federal funding, so this critical research is substantially supported by private fund-raising.
Because the association relies on awareness events like the Family Fun Day and Carnival organized by Felsher — and a team of 20 volunteers — the association is always excited to see new faces at the events. There are few hours as fun and enriching as time spent at the Boat Basin playing games, enjoying food, and raising awareness and funds for the Williams Syndrome Association.
Shnieka Johnson is an education consultant and freelance writer. She is based in Manhattan where she resides with her husband and son. Contact her via her website: www.shnie
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