SCHWARTZ-NEWTON FAMILY
This Spotlight appeared in our October 2024 newsletter.
How did you get involved with the Foundation?
We’re Margo, Joel, and Oliver Schwartz-Newton, and we’ve been with the foundation since the beginning. Another type 3 from our chapter was working for a sponsoring company and tipped us off about the inaugural conference in August 2017. We’ve attended every conference since then.
Where do you live? Where would you take someone visiting for the first time?
We live in Northbrook, Illinois, a suburb of Chicago. We’d want to take a Chicago newbie on the architecture tour that goes on the Chicago River, visit Grant Park and Millennium Park to see the amazing sculptures and architecture, and take in a play at the Lookingglass Theater.
What are some of your hobbies?
Joel likes to drink craft beer with his eponymous beer club. Oliver likes to do anything creative from experimenting in the kitchen (especially with marshmallows) to creating with found objects, and video games. Margo enjoys hiking (though there’s not much here in the Midwest) and playing tennis.
What are some of your favorite memories from past Conferences?
At the very first conference, when we had the opportunity to look around and see all the people just like us, the wave of emotion that spread across the room was palpable and surreal. Other favorite moments include beer tastings during trivia and karaoke, strengthening relationships during down time at the pool and on the patio, and seeing Oliver hold a python. Most recently, seeing Oliver – with an extreme fear of needles – poke himself (out of necessity) during a private session with Nurse Natalie. Considering how a few years prior we had a traumatic experience with him in the ER during the conference that involved enough screaming to make us nervous someone would question what was happening, this was a monumental achievement.
What have been some valuable tools you’ve learned from being a part of the Foundation about parenting a child with sVWD?
We are not alone! (I got emotional just writing this!) We’ve learned so much from other parents with kids a little older than Oliver, and they’re our go-to people when we need help and feedback. In turn, we’re quick to share this wealth of information with new families and hope that somehow our experiences will put others at ease. Oliver has met so many kids at the conference that one day when training new school staff he said, “There are lots of people with VWD type 3!” I had to set the record straight, but it was so cool to hear him think it’s normal. That could never have happened without this conference.