Third annual Rare Affair raises awareness and funding for rare disorders research

PINE PLAINS — For the third year in a row, Erik and Michelle Hutchinson of Colton’s XXXtraordinarY Cause were thrilled by the outpouring of community support that their family and nonprofit received at the third annual A Rare Affair on Saturday, Sept. 21.

Driven to “help children in our community who have rare disorders by raising awareness for their specific conditions, as well as funds for research and treatment,” Colton’s XXXtraordinarY Cause stands as a 501(c)3 nonprofit that sparked when the Hutchinsons’ son, Colton, was diagnosed at 10 months old with a rare genetic syndrome known as 48XXXY. 

As described on the National Center for Advancing Translational Sciences website, 48XXXY is a disorder that presents “a type of chromosome abnormality characterized by the presence of two extra X chromosomes in males,” and may include symptoms such as learning difficulties, an intellectual disability, low muscle tone, delayed growth and others.

Since June 2016, Colton’s XXXtraordinarY Cause has welcomed community support and tremendous funding for the community’s children, particularly at the nonprofit’s A Rare Affair event.

Driving up the winding road to Globe Hill at Ronnybrook Farm, where the gala was being held, guests began arriving around 5 p.m., dressed in farm chic clothing. In anticipation of the dinner, dancing and live music promised in the event’s promotion, guests mingled beneath the enormous white tent, strolling toward the section of the tent set aside for the silent auction and pouring cold brews from the beer truck parked outside the tent. Also parked outside the event tent, a truck from Out On A Limb Tree & Land raised a magnificent American flag into the air, capturing the notice of guests who were already enjoying the spectacular view of the sun sinking behind the mountains.

Auction prizes were abundant and featured a variety of tastes and interests, from a day of studio time at Clubhouse in Rhinebeck, N.Y., and two VIP tickets to the taping of “Live with Kelly and Ryan” to four hours of home cleaning services and a hot towel shave from Pine Plains Barber Shoppe & Shaving Parlor. 

As a special recognition, Hudson Valley twin brothers Dominick and Vincent Nasi were honored at this year’s gala. In addition to being diagnosed as autistic and having a bilateral hearing impairment, both brothers were diagnosed with multiple conditions, including Anhidrosis (the inability to sweat normally), PANDAS (referring to pediatric autoimmune neuropsychiatric disorders associated with streptococcus, which involves sudden changes in personality, behavior and movement following a strep infection) and Raynaud’s Syndrome (a disorder of the blood vessels).

After taking the time to thank everyone for their generosity, Erik Hutchinson cued the beginning of the dinner and dancing, and a line  formed for the evening’s buffet. Whether guests dined underneath the tent or under the stars, they could hear the live music performances, inspiring the young and young at heart to dance.

“We’re just overwhelmed by the support and we can’t thank everyone enough,” Michelle Hutchinson said.

Along with raising funds for the Focus Foundation, a research-based agency exclusively dedicated to identifying and assisting families and children with X & Y Chromosomal Variations, this year’s event dedicated 50 percent of its funds to Special Olympics New York.