Rally For A Cure Raises Awareness of Angelman Syndrome

People from across the USTA Eastern tennis community came together at the USTA Billie Jean King National Tennis Center to take part in the latest event in the Rally For A Cure series, which are fun tennis days designed to raise money and awareness for Angelman syndrome (AS), and specifically the Foundation for Angelman Syndrome Therapeutics (FAST). 

The outdoor courts of the home of the U.S. Open were filled with 60 players of all ages and levels participating in tennis drills and games, from Red Ball Tennis to match play, as well as Cardio Tennis.

“Everyone was so excited to be a part of the event – it was a great success!” said Monica LaMura, the Director of Marketing & Communications for USTA Eastern. “The goal of the Rally For A Cure series is two-fold: to get more people playing tennis and to raise awareness of Angelman syndrome. I think it’s safe to say that our attendees really enjoyed themselves on court!”

Throughout the year, USTA Eastern partners with organizations to use tennis as a vehicle to not just raise money for a wide array of charities focused on diseases, disabilities, issues and more, but also shine a spotlight on challenges that oftentimes get overlooked. 

“Bringing awareness to people living with disabilities matters because it changes how communities, schools and healthcare systems treat and include people,” LaMura explained. “Building awareness and advocating for people living with a rare disease is not just about ‘understanding differences’–it can directly improve access, opportunity, safety and quality of life.”

While LaMura plays a key role in many Eastern’s initiatives, this event series and its mission in particular holds a special place in the hearts of LaMura and her husband, Rob. Their son, Colin, was diagnosed with AS when he was an infant, leaving the couple scared and confused upon first hearing the news. 

Angelman syndrome is an extremely rare and also completely random and non-inherited mutation of a single gene affecting just one in 15,000 people. People living with Angelman syndrome experience seizures, have balance issues, limited speech and need life-long care. 

“My husband and I were devastated [when we first found out]. Before Colin was diagnosed with AS, we had never heard of the condition. The life we had imagined for our infant son was gone. It was an incredibly difficult time for our family,” LaMura recalls.

However, the family was soon connected with FAST which brought them immense comfort and tremendous relief. They met with other Angelman families, and learned there was hope to navigate Colin’s condition. 

Specifically, there are treatment options with 23 programs in the drug development pipeline with five in investigational clinical trials. 

“The science is there–it’s promising,” LaMura added. “FAST has invested over $64 million in research grants and venture philanthropy in the last five years. Tennis is my tool–it’s what I have to offer families and how I am able to fundraise to contribute to these incredible efforts, and to support FAST. I’m not only interested in helping Colin, I want to help all kids living with AS and their families by helping FAST to get therapeutics approved and across the finish line.”

Through her dedication, and the work done by FAST, individuals and their families suffering from AS have more hope than ever. Colin is now a thriving toddler, and will continue to remain an inspiration for his family. 

“I want people to understand my son–both the challenges he faces and the joy he brings into the world,” she said. “Colin is an absolutely incredible kid, and he works harder than anyone I know. He lights up every room he walks into, and brings joy and laughter wherever he goes. The pride he brings me is unmatched. I am forever grateful to be Colin’s mom–I want to bring him as much happiness as he’s brought me.”

Tennis has a way of bringing people together, and LaMura continues to use the sport to enact positive change for those suffering from AS. There are two more events in the Rally for a Cure series this year which will be held in Connecticut later this summer. 

To learn more about Colin, AS, FAST, or to make a donation or learn about sponsorship opportunities, visit bit.ly/rallyforcolin.

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