Connections, information gained from Family Conference

“Each Kleefstra Syndrome child and parent is different, but we all have so much in common that the rest of the world cannot really understand. Being together in-person with our collective KS family is so joyful and so educational.”

With those words, Margo Metzger of North Carolina summed up the collective sentiment of attendees at IDefine’s first in-person North American Kleefstra Syndrome Family Conference, “Living in Holland,” held June 23-25 in Naperville, Illinois. Metzger, co-director of IDefine communications, attended the conference with her 9-year-old daughter, Adelind.

The event, which welcomed 120 adults and 80 children (see Sib Shop article), offered many families their first opportunity to meet other KS families in person.

Nicole Sagan and Frank Aguila of Michigan registered for the conference after their 1-year-old son, Dominic, was diagnosed with KS. “

“To actually meet and hug people going through the exact same thing was important,” said Sagan. “It’s easy to meet people over the internet in that sense, but to physically have a connection makes it more real and meaningful. I also got a new sense of not being alone in all of this, because you can see the other kids similar to our own.”

Valuable Information 

The conference focused on providing practical education and tips for families raising children and adults with KS. It included keynote addresses from Dr. Karlijn Vermeulen-Kalk from Radboud University Medical Center on regression, and Dr. Siddharth Srivastava and Zoë Frazier from the Kleefstra Syndrome Clinic at Boston Children’s Hospital talking about KS clinical experiences and genetics 101, respectively. Breakout sessions covered a range of topics including ABA therapies, self-care for parents, and legal and financial planning strategies.

Attendees traveled from around the country, and all took home something valuable.

“It was very informative and organized,” said Kiante and Marlon Holmes, who traveled to the conference with their 5-year-old son, Hezekiah, from Portland, Oregon. “You can tell every presenter had experience with our population and they were compassionate. Most valuable to me was learning the legal side of having a child with disabilities and being around families that understand what you are going through.”

Several people noted the financial planning strategies session was particularly valuable.

“While I’ve had the opportunity to spend time with other financial advisors with this specific experience in the past, I have never heard from someone as knowledgeable as Mary Anne Ehlert,” said Darrick Reed, IDefine board chair. “She is truly an expert in this space and provided many insights as to how we can best prepare for the future and set our daughter (Brianna) up for success over the long term. That session alone was worth the trip.”

One of Ehlert’s recommendations is for parents to put together a comprehensive living document that summarizes their KS child’s likes/dislikes/therapies, etc. so that when they die, successors will know how to best help them live enjoyable lives.

Connections Made

While the educational sessions were full of good information, many found the opportunities to socialize the most rewarding.

“The best part of the conference was watching my daughter play in the pool with other KS kids while I visited with parents,” said Metzger.

Monica and Mike Christy of Michigan attended with their 3-year-old daughter, Marissa.

“For us, the most important take away was the hope we gained from seeing older KS kids and young adults that are doing so amazing,” said Monica.

Mike Goff, one of the conference organizers, attended with his 22-year-old daughter, Julie.

“One specific value is meeting parents of older adults,” said Goff. “There are not many known people with KS in their 30s but talking with those parents to understand some of the challenges as people with KS age into adulthood is very helpful to us. It is also important for Julie to get to know other people with KS.  She left with a sense of how fortunate she is and made a new set of KS friends of all abilities and ages.”

What’s Next

With tentative plans to make the Family Conference an annual event, attendees plan to attend again in the future.

“Yes, we’ll be back and bringing the grandparents along,” said Sagan. “We want more people that are involved in the care of our kids to understand them and what we as parents are going through.”

The conference was made possible thanks to the hard work of the organizing committee: Julie Drake, Geoff Rhyne, Mike Goff, Becky Libby, Channing Alden, Mindy Kraemer and Jamie Hazlett.

Also, special thanks to Mike and Cathy Goff who made a $21,000 restricted donation to help cover costs of the conference.