Devin and I had the great privilege of attending The Carousel of Possible Dreams as guests of CureDuchenne. CureDuchenne was one of the four charities to benefit from this year’s Chicago area event, organized by the Festival of Children Foundation and held at the beautiful Sanfilippo Estate in Barrington, IL. We were very fortunate to spend the evening among amazing company too, including CureDuchenne Founders Paul, Debra, and Hawken Miller, CureDuchenne Director of Development Meg Wood, and representatives from Castle Creek Pharmaceuticals – Tim Cunniff, Steve Wanaski, and Jenny Swalec. I couldn’t have imagined a better group of people to enjoy the evening with.
Devin and I were completely amazed the entire night. It began the moment we arrived as Devin immediately noticed a 2018 Karma Revero parked in front of the building. Karma Burr Ridge actually brought four Reveros on site to allow guests the opportunity to test drive a true dream machine. As a new driver and someone who’s been racing ATV’s for the past 9 years, Devin’s wild thoughts about what he could do behind the wheel of one of the Reveros had him bursting with excitement. Unfortunately for him, I wasn’t willing to take on the risk of allowing him to drive a $130,000 car. In fact, I didn’t even want to risk driving one myself, so I asked the Karma representative to drive for us. It was the most thrilling car ride I’ve ever been on!
Place de la Musique
After the rush of the Revero experience, we headed over to the 45,000 square foot mansion on the estate where we met up with Debra, Paul, Hawken and Meg. The mansion, known as “Place de la Musique,” is filled with beautifully restored antique music machines, phonographs, arcade and gambling machines, chandeliers, the world’s largest theatre pipe organ, and other antiques. Most people would be astonished at the sight of any of the individual items in the home. My attempt to take it all in at once and still be able to appreciate how truly grand the collection is as a whole, was a flawed endeavor. The magnificence is beyond my comprehension. Unfortunately, the few pictures we took don’t do it any justice. I highly encourage you to visit the estate if you get the opportunity or at least check out the website for more details.
Delicious Food, Delightful Company
The building where the reception took place was adorned with hand-carved wooden ornaments, reminiscent of the masquerade balls that were once common at carnivals in Europe. The dinner selection was fantastic and exquisitely presented including gorgeous ice sculptures used to chill the shrimp and lobster. Devin loved the foods he chose including sushi and lamb, but it was the variety of cheesecake on the dessert tables that demanded my attention. They were calling me by name and I can assure you, they did not disappoint.
There was plenty of lively discussion at our table covering a wide range of topics. Devin had a blast just being a kid and talking about video games with Hawken. I really enjoyed seeing the two of them interact and suspect they’ll continue to stay in touch. I’m pretty sure everyone knows how passionate I am about DMD advocacy and especially with regard to ensuring patients are able to access beneficial treatments in a timely manner without unusual or excessive effort. It goes without saying, I was extremely interested in the opportunity to talk drug research, development and regulation with three outstanding professionals. Tim, Steve, and Jenny were all very willing to discuss developments throughout the industry involving a number of different diseases. Their vast experience in the drug approval process was very apparent and the success they’ve achieved in securing FDA approvals is a testament of their skill, wisdom, and knowledge.
A Truly Magical Ride
It was soon time for us to ride the world’s most complete salon carousel in existence, the Eden Palais. The historic carousel was built in 1890 and toured France until it was sold to a Colorado amusement park in 1959. It was eventually acquired by the Sanfilippo Estate in 1987 and fully restored to its original state. The carousel measures 46 feet in diameter and includes a carved facade that is 89 feet wide and 42 feet tall. The Eden Palais offers its riders, 36 life-sized horses, four gondolas, and a spinning lovers’ tub. Debra, Paul, Hawken, Devin and I packed in the spinning lovers’ tub while Steve and Tim each opted to ride one of the horses. We had a blast spinning the tub around as fast as we could. I don’t know what anyone else thought, but I chuckled each time I looked over at Tim and Steve riding their horses.
The time we spent on the carousel that evening, really embodied the spirit of the event for me. The joy I felt in that moment reminded me of the carefree days I experienced as a kid. Unfortunately, I’m well aware of the fact that some children aren’t able to experience the same pleasure due to factors beyond their control, such as constantly having to manage a serious health condition. All children deserve the opportunity to experience the joy of carefree adventure. Certainly, the Festival of Children Foundation recognizes that as well and I’m confident their efforts will continue to build upon the progress they’ve already made toward ensuring all children live free from unnecessary burden.
Neither of us wanted the night to end. We’re extremely grateful that we had the opportunity to participate in such an incredible experience. We’ll treasure the memories forever.