This is the 6th annual SuperLee's Milk & Cookies fundraiser for TSA.
The Timothy Syndrome Alliance was co-founded in 2015 by Mary Ann Ciciarelli under the SADS (Sudden Arrhythmia Death Syndrome) Foundation. Lee Ciciarelli, son of Mary Ann and Christian Ciciarelli, was diagnosed with Timothy Syndrome at the age of 1 in 2011. The Ciciarellis started an annual holiday Milk & Cookies fundraiser party in their home as a way to bring awareness to LongQT syndrome, specifically type 8 and Timothy Syndrome.
Over the past 6 years they have raised over $50,000 for Timothy Syndrome family support and awareness. Just a few months after TSA was founded, Lee lost his battle against Timothy Syndrome on November 24, 2015 at age 5 1/2.
The family is continuing the fundraiser in SuperLee's memory to help other families who are affected by this extremely rare and complicated syndrome. 100% of the money raised for TSA goes to support families with Timothy Syndrome, there are no overhead costs for the group as it's run by volunteers.
For those in Charlotte please contact firstname.lastname@example.org to attend the event with your family.