Kool Kid Alliance Fundraising Event

The Key Club is fundraising money for the Kool Kid Alliance! The KKA promotes awareness for Koolen-de Vries Syndrome and provides assistance to families of Kool Kids to help pay for medical expenses, assistive technology, and other resources and therapies. The KC is promoting KKA in honor of Daniel who is a kindergartener within the Carle Place Union Free School District who faces difficulties as a result of KdVS.

Koolen-de Vries Syndrome (KdVS) is a rare genetic syndrome caused by missing a small part (micro deletion 17q.21.31) of chromosome 17 or by a mutation in the KANSL1-gene. KdVS causes developmental delays, intellectual disability, language disorders, low muscle tone (hypotonia), epilepsy, heart defects and other major medical issues. KdVS was discovered in 2006 by Dr. David Koolen and Dr. Burt DeVries. There are about 135 Kool Kids currently diagnosed in the United States. It is estimated that there are about 500 Kool Kids worldwide.

Since KdVs is so rare, Kool Kid Alliance relies heavily on family, friends and communities to help support their cause. Kool Kid Alliance is an established 501(c)(3) nonprofit organization that runs entirely by volunteers. All of the proceeds go directly to helping Kool Kid families. Their goal is to keep administrative costs to a minimum. 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.

140 Participants involved in the cause and volunteer efforts.