Carle Place students and faculty to raise funds for Kool Kid Alliance
Students and teachers in the Carle Place School District are getting ready to walk the runway to raise money for the Kool Kid Alliance (KKA), as part of their annual fashion show fundraiser.
KKA is an organization which promotes awareness for Koolen-de Vries Syndrome (KdVS) and provides assistance to families of Kool Kids to help pay for medical expenses, assistive technology and other resources and therapies. The Key Club is promoting KKA in honor of Daniel, a kindergartener in the Carle Place School District who faces difficulties as a result of KdVS.
KdVS is a rare genetic syndrome caused by missing a small part of chromosome 17 or by a mutation in the KANSL1-gene. The syndrome causes developmental delays, intellectual disability, language disorders, low muscle tone (hypotonia), epilepsy, heart defects and other major medical issues. Due to complications from KdVS, Daniel has respiratory issues and has been hospitalized often. He is intellectually disabled and has apraxia of speech, low muscle tone and gross/fine motor planning difficulties. Despite the challenges that Daniel faces, he is a happy, friendly and musical little boy.
Daniel is one of four Kool Kids on Long Island; there are about 135 currently diagnosed in the United States and only about 500 worldwide. Since KdVs is so rare, KKA, a nonprofit run entirely by volunteers, relies heavily on family, friends and communities to help support their cause. All of the proceeds go directly to helping Kool Kid families.
The Key Club’s student/teacher fashion show has raised more than $50,000 since its inaugural event in 2009. Last year alone it raised $10,000 for the Cystic Fibrosis Foundation and in 2015 it raised $18,000 for ITP Awareness.
The Club does numerous charitable and service projects each year, including trips to deliver toys at Winthrop University Hospital, which is where they first met Daniel in 2015. His mother sent the students the note, and Key Club advisor Maddalena Buffalino says students were touched by his story.
Both students and faculty members will model clothing borrowed from Lord and Taylor Manhasset, Serafina’s Design Dress Boutique, BASS, Men’s Wearhouse and GOAT USA during this year’s fashion show, which takes place Friday, April 28 in the Carle Place High School auditorium. Ticket sales for the fashion show begin at 6:30 p.m. in the lobby. The minimum donation is $5 for admission. Show starts at 7 p.m. in the auditorium. Proceeds will be donated to the Kool Kid Alliance in Daniel’s name. For more information contact Buffalino at firstname.lastname@example.org.