May 17, 2010
Old Westbury Country Club
Old Westbury, NY
For more information, visit www.emmory.com
or contact Marc Shapses at (212) 326-8678.
The Shapses’ daughter Emmory is a bright, eager 13-year-old with an enormous smile and a love for singing. As Emmory has grown, Marla and Marc Shapses have struggled with the complexities of TSC and the enormous challenge of raising a daughter with special needs. As they continue their quest to provide the best opportunities for Emmory, they also remain committed to the overall fight against TSC and to improve the lives of all those affected.
“Families afflicted by this disease need a lot of support,” Marc shares. Diagnosed at four and a half months of age, “Emmory has undergone numerous surgeries including brain and an insurmountable numbers of medical procedures, tests and hospitalizations. She regularly receives specialized therapies, remaining a hero through it all and for the most part, with a smile on her face."
Because of everything their daughter has endured, the Shapses’ dedicated their lives to raising funds to help find better TSC treatments, and ultimately a cure. They also use their philanthropy to upgrade the TS Alliance’s infrastructure, technology and staffing.
Marc has sat on the TS Alliance board and was one of the first board members to recognize the need for a website. He encouraged the TS Alliance to hire professional fund-development staff, urged the TS Alliance to retain a professional firm to help secure federal research dollars through grassroots advocacy efforts and then donated seed money to hire that firm.
But the Shapses’ didn’t stop there.
In 1999, the Shapses’ formed the ERS Charitable Foundation, named for their daughter, and held the first Emmory Reagan Shapses (ERS) Classic golf tournament, raising more than $350,000. To date, the ERS Charitable Foundation has raised nearly $4.5 million. The foundation distributes funds to various non-profit organizations dedicated to TSC and/or improving the quality of life of those affected, including the TS Alliance.
As a C.P.A., Marla takes care of the monetary matters of the foundation in addition to being a tireless advocate for Emmory. She continues to work closely with physicians to improve TSC care and has worked with teachers, administrators, and therapists, to name a few, to elevate the education for those afflicted by the disease. Children with TSC usually have a more unique learning style than other children not affected by TSC. Therefore TSC kids need to be approached and taught differently in order to help them reach their potential and to maximize their happiness.
Looking to the future, the Shapses' know that continued funding is important to improve educational opportunities for children with TSC as well as further discoveries of the genetics of TSC. Through TS Alliance funded researchers, the two genes that cause TSC have been discovered but in some cases, such as Emmory, her specific mutation within those genes cannot be found. For this reason, Emmory continues to be an only child and the Shapses’ remain committed to further research in this area.
The Shapses’ family remains grateful to Studley, who is a platinum sponsor of the golf tournament and where Marc has been employed for the past 17 years.
Together, Marla and Marc have made a difference not only for their daughter, but also for the thousands of people affected by TSC across the country through their unwavering commitment to fundraising, advocacy and technology.