UpComing
Events
Join us for our 2019 "A Rare Affair" Fundraising Event!
This year we will honor Dominick and Vincent Nasi, twin brothers who have been diagnosed with rare conditions such as Anhidrosis, PANDAS and Raynaud's Syndrome, in addition to having Autism and Bilateral Hearing Impairment. These two have been an inspiration by turning adversity into triumph and hope through their participation in Special Olympics. In their name, we will be donating 50% of A Rare Affair profits to Special Olympics New York. Our hope is that their determination and strength will continue to live on through other athletes like them for many years to come.
The event is scheduled for Saturday, September 21nd at 5pm. It will take place at Globe Hill at Ronnybrook Farm in Pine Plains, and will include dinner, open bar, live music, dancing and silent auction.
Tickets are $125 per person.
Early Bird Pricing - $100 per ticket if purchased by August 9th!
The 2018 A Rare Affair proved to be a special evening; we hope to see you all back in 2019, and some new faces too!
Colton's Story
This is Colton Robert, our carefree little boy. He has a sense of humor and smile that will melt your heart.
As you can imagine, Colton is one of the brightest lights in our lives. He also became the inspiration for Colton's XXXtraordinarY Cause after he was diagnosed with a rare genetic condition called 48XXXY. Colton's XXXtraordinarY Cause is a not-for-profit we have created to achieve the following goals:
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We seek to raise awareness for 48XXXY and other X & Y chromosomal variations.
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We seek to raise awareness for rare diseases/syndromes that affect children in our community.
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We host events to raise funds for organizations that help children with X & Y variations as well as other rare diseases/syndromes.
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About 48XXXY
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48XXXY is a rare condition that occurs in only 1-50,000 births. Although Colton's specific variation is rare, there are several X & Y Variations which are occurring in 1-500 births; 7 out of 10 cases will never be diagnosed.
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Failure to diagnose and treat these children can jeopardize their future; they can be left to struggle with learning disabilities, language impairment, motor planning deficits, reading dysfunction, attention disorders and behavioral problems.
We want to be sure that every parent knows about the importance of diagnosis and early intervention.
These children may or may not have 48XXXY like Colton, but every one of them is extraordinary.
