Raelynn’s Run unites community, raises $30,000 for Kleefstra syndrome research

When Jaclyn Rosenberg decided to organize Raelynn’s Run—a local 5K and kids’ fun run named after her six-year-old daughter—she wasn’t sure what to expect. It was her first time hosting a fundraiser, and she admits she relied on a mix of family support, guidance from IDefine, determination, and even a little help from ChatGPT to pull it all together.

What happened next exceeded every expectation. More than 100 participants came out to the Farmingdale, New York, park event, raising more than $15,000 for IDefine’s mission to support families and advance Kleefstra syndrome research. Thanks to a generous donor match through IDefine, the total impact grew to more than $30,000.

“We were absolutely overwhelmed with gratitude,” Jaclyn said. “Every step taken, every dollar donated, and every cheer along the way brings us closer to raising awareness, supporting research, and creating a brighter future for those living with Kleefstra syndrome.”

Raelynn, who was diagnosed with Kleefstra syndrome at age four, enjoyed every minute of the day surrounded by classmates, friends, and family. Many of her teachers even joined the run—one more reflection of the strong community that has rallied around her.

Beyond fundraising, Jaclyn and her husband, Michael, saw the event as a chance to raise awareness about both Kleefstra syndrome and the importance of genetic testing.

“So many children are diagnosed with autism and never go on to receive the genetic testing that could give them a more precise diagnosis,” she said. “With something as simple as a blood test or cheek swab, families can finally get answers—and that opens the door to more targeted care and support.”

The fundraiser featured raffles, family-friendly activities, and information about Kleefstra syndrome. Local businesses, sports teams, and even the New York Jets contributed donations and prizes. For Jaclyn, it was proof that small steps—literally—can make a big impact.

“Organizing Raelynn’s Run was a lot of work, but it was so worth it,” she said. “It was a great day for our family, our community, and for IDefine. And we’re already looking forward to next year.”

If you are interested in more information or support in hosting a fundraising event, contact IDefine at unlock@idefine.org.