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Colton’s XXXtraordinarY Cause – TBRS Community as Honoree at ‘A Rare Affair’

Colton’s XXXtraordinarY Cause selects Aevary Kiernan from TBRS Community as an honoree at ‘A Rare Affair.’

Category:      Event
Location:    Pine Plains, New York
Date:             09/22/18 – 09/22/18
Duration:        1 Days
Time:         12:00 AM – 6:00 AM (EST)

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Colton’s XXXtraordinarY Cause was created in honor of Colton Robert. When Colton was just 9 months old he was referred to a geneticist because he was failing to thrive and was behind developmentally. His parents found out that he a rare syndrome called 48XXXY. Boys who have 48XXXY have physical struggles due to low muscle tone, complications with language and speech, developmental and behavior problems, and varied health issues. Colton has been fortunate to have gotten an early diagnosis that has resulted in early hormone treatments and therapies that are believed to have a positive impact on his future. His parents’ goal is to spread awareness, not only for 48XXXY, but for all X & Y variations (as they occur in 1 in every 500 births), so that these children can get an early diagnosis and a better chance to reach their full potential. Read more about Colton’s XXXtraordinarY Cause here.

Each year Colton’s XXXtraordinarY Cause selects an honoree and splits the proceeds from their annual event ‘A Rare Affair’! At their 2nd annual ‘A Rare Affair’ in 2018, TBRS Community’s very own Aevary Kiernan was chosen as the honoree with TBRS Community receiving the funds. The event made more than $65,000, donating $32,500 to Tatton Brown Rahman Syndrome Community! The event date was perfect timing, as it was the same weekend as TBRS Community’s first annual USA conference. A few of the families were able to attend along with the Kiernan family. What a wonderful evening.

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