According to Camille Filippazzo, the Anthony Filippazzo Grant, which is named for her son, shown above, contributes funding to present and future research studies into the causes of Williams Syndrome and explores potential therapies for people afflicted with the disease, a rare genetic disorder.
The Anthony Filippazzo Grant for Williams Syndrome Research Fundraiser will be held at the El Caribe Country Club in Brooklyn, N.Y. on Friday, Nov. 3. The event will recognize Dr. Barbara Pober of Massachusetts General Hospital and Harvard Medical School, Boston, Mass. Tickets and sponsorship opportunities are currently available.
According to Camille Filippazzo, the Anthony Filippazzo Grant, which is named for her son, contributes funding to present and future research studies into the causes of Williams Syndrome and explores potential therapies for people afflicted with disease.
“WS is a rare genetic disorder that can affect anyone. Creating awareness is so important ,” she said. “Anthony was born in 2011. I had a normal, full-term pregnancy, but after Anthony’s birth we immediately started to notice problems. Unfortunately, we were not aware of WS at that time and it would be years before we fully understood the cause of Anthony’s difficulties.”
Anthony was born with a hole in his heart, bilateral hearing loss and an overabundance of red blood cells that were oddly colored. At eight weeks of age, Anthony stopped breathing due to pneumonia and RSV. After that, the Filippazzos created a neonatal intensive care unit in their home and hired a critical intensive care nurse to help care for Anthony.
“It was a difficult time,” Filippazzo added. “We didn’t understand what was happening. Anthony had many different episodes and was diagnosed with autism. Stefano and I saw a number of doctors and after about two years, we met with a geneticist who recognized that Anthony had WS. WS is difficult to diagnose because it presents very differently from patient to patient.”
WS is caused by the microdeletion of 26 to 28 genes on chromosome number 7. People who have WS are typically missing a copy of the elastin gene, resulting in interference with the free flow of blood throughout the body. Conditions such as vascular stenosis are common among WS patients and many require at surgery during their lifetime to address the stenosis. WS also poses additional risks to patients undergoing surgery of any kind because it increases the incidence of adverse reactions to anesthesia and can induce sudden cardiac death.
The Filippazzos credit the Williams Syndrome Association (WSA) with providing both inspiration and support to their family.
“In 2013 we attended a WSA Walk in Battery Park,” Filippazzo recalled. “As we became more involved and met other parents of WS patients, we were moved to increase our involvement. In 2016 a group of parents held the White Knight Event. Three years later the WSA inaugurated the Anthony Filippazzo Grant, which raises money that goes directly into WS research. These events not only raise funds, but they also create opportunities for families impacted by WS to meet and support each other.”
There are two WS benefits currently scheduled for 2023. The first is a Wine Tasting for Williams, which will be held on April 17 at Valbella At The Park, 3 Bryant Park, 126 W 42nd St. in Midtown Manhattan. The gathering will take place between the 5:30 and 9:30 p.m., and registration is requested.
On Nov. 13, The Anthony Filippazzo Grant for Williams Syndrome Research Fundraiser will take place at the El Caribe Country Club in Brooklyn. The gala will feature an exciting auction as well as other creative celebrations of the unique individuals who are challenged by WS.
“As difficult as our journey has been, it has been amazing to meet the beautiful children in the WS community and experience the love and joy of these wonderful people,” Filippazzo said. “Our dream is that this work will lead to a better understanding of WS and hopefully therapeutic solutions sometime in the future.”
A variety of event sponsorships, journal ads and donation options are available. For information about the upcoming events and ticket sales, contact Camille and/or Stefano Filippazzo at 718-744-7508 or [email protected].
— By Stan Lemond