Fundraisers don’t have to be big or expensive to make a difference—they can be as simple as having people over for milk and cookies. That’s something Mary Ann Ciciarelli knows to be true. For the past seven years, her family has hosted a milk-and-cookies fundraiser in their North Carolina home. They’ve raised about $70,000—all for Timothy Syndrome.
Timothy Syndrome is a rare form of Long QT Syndrome that comes with several possible complications: webbed hands and feet, developmental delays, structural problems with the heart, dental problems, gastrointestinal issues, and a weakened immune system, among others. There’s no definitive count of how many people have the condition, but the estimate is somewhere between 30 and 50 people worldwide. Because Timothy Syndrome is so rare, research is sorely lacking.
Mary Ann’s son, Lee, had this condition. He was diagnosed when he was 1 year old. When he was 5, he passed away after hypoglycemic seizures—a complication he faced as a result of Timothy Syndrome. Just a month before he died, Lee dressed as Superman for Halloween, and so did the rest of the family. He earned the nickname “SuperLee,” and it stuck. He left a Super legacy behind.
The milk-and-cookies fundraiser is one part of that legacy. The family held the first fundraiser in 2011, the year Lee was diagnosed. After several long, difficult months, they wanted to throw a party to thank everyone for their support and raise awareness about Timothy Syndrome. They also wanted to raise some money for the SADS Foundation, specifically for Timothy Syndrome support and research.
The party was simple. It was an open house, so people could come and go as they pleased. Guests munched on cookies and milk, and the Ciciarellis gave out information on Timothy Syndrome. No one was required to donation, but everyone was encouraged to. The amount didn’t matter—every dollar mattered. By the end of the party, thanks to their roughly 100 guests, the Ciciarellis had raised about $15,000. Mary Ann worked with the SADS Foundation to set up a special fund for Timothy Syndrome.
That party has since become a tradition. Old friends of Lee’s still stop by with their parents, and Mary Ann is grateful to them for helping keep Lee’s memory alive.
Since the event is held around the holidays, the Ciciarellis give their guests a special Christmas ornament to remember the event and the cause.
The community has stepped up to offer support. Friends have helped by donating cookies and milk, and local bakeries also help out with donations. For the most recent party, a company donated a bounce house, and a local singer/songwriter gave a few hours of performance time.
Mary Ann also became part of a larger effort. In August 2015, just a few months before Lee’s death, she was one of three women who founded the Timothy Syndrome Alliance, or TSA. Another founder, Courtney Waller, has a daughter with Timothy Syndrome. Courtney’s daughter was featured in a CBS story about children with rare diseases.
The other founder is Katherine Timothy of the SADS Foundation—the person Timothy Syndrome is named after. She spent a lot of time following the kids who turned out to have this condition.
But there are still a lot of unknowns about Timothy Syndrome. That’s where the TSA comes in—one of its goals is to be a source for funding research. The alliance hopes to partner with a major medical facility in the near future.
One key aspect of Timothy Syndrome that needs to be researched is the life expectancy of people who have it. Many people with the condition die during childhood, but there is a 27-year-old woman still living with it.
The alliance also exists to be a resource for families. The TSA has connected with Timothy Syndrome families in different parts of the world, including Norway, New Zealand, and Hong Kong. And some of the money raised for the TSA goes toward scholarships for families to attend the SADS Conference, where they can connect with other families in person.
As for Mary Ann, supporting Timothy Syndrome families and searching for answers has become her life’s work. “I can’t help Lee anymore,” she said. “But I can help other kids like Lee.”
What you can do
If you would like to make a donation to the Timothy Syndrome Alliance, click here.
If you are interested in holding a fundraiser for Timothy Syndrome, contact Mary Ann at firstname.lastname@example.org.
You can also follow the Timothy Syndrome Alliance on Twitter.