A Rare Affair
By Erik Hutchinson -
The most rewarding part of being a small business owner is giving back to the community. Since we were established 40 years ago, we’ve given to local nonprofits, schools, and youth athletic leagues - the heart and soul of the towns we serve. While I always admired the hard work and selflessness of the individuals behind these organizations, it took on a whole new meaning when my son was diagnosed with a rare genetic syndrome (48XXXY) in 2015, at age 10 months. As we navigated our new normal and tried to educate ourselves on the condition, my wife Michelle and I quickly realized how little information and awareness was out there - a direct result of lack of funding. Unfortunately, we were not alone. Most rare diseases and syndromes only receive funding for research and cures when the families impacted raise funds, as federal monies are generally not allocated for these purposes.
After discovering this, we were inspired to turn our heartache into something positive and started a nonprofit called Colton’s XXXtraordinarY Cause. Initially our energy was focused on X&Y Variations, but through Colton’s diagnosis, we connected with other local families whose children have other rare syndromes/diseases. We decided to do more.
Now we host an annual event, A Rare Affair, honoring a child in the Northern Dutchess community living with a rare disease/syndrome to raise funds/awareness for their condition. Our first event, in September 2017, honored Maddie Clements of Red Hook, who was diagnosed with Juvenile Dermatomyositis. Over 350 attendees joined us, and close to 100 local businesses generously gave sponsorships, silent auction items, and in-kind donations. Over $40,000 was raised for the CureJM Foundation and The Focus Foundation. This year’s event will be held on September 22, and will honor Aevary Kiernan of Standfordville who was recently diagnosed with Tatton-Brown Rahman Syndrome.
Of course, Crown Energy takes great pride in participating, and recently had one of our Tanker Trucks redesigned with the Colton’s XXXtraordinarY Cause logo. A percentage of the profits made from the gallons of propane delivered by this truck will go directly to Colton’s XXXtraordinarY Cause. To learn more, visit coltonsxycause.com.