COLTON'S XXXTRAORDINARY CAUSE
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.
In honor of our son, who was diagnosed with a rare genetic condition called 48XXXY, we created Colton's XXXtraordinarY Cause. When you see our Colton’s XXXtraordinarY Cause truck, you’ll know that it represents our love for our son and our commitment to helping other children with rare conditions.
Our not-for-profit is designed to achieve the following goals:
We seek to raise awareness for 48XXXY and other X & Y chromosomal variations.
We seek to raise awareness for rare diseases/syndromes that affect children in our community.
We host events to raise funds for organizations that help children with X & Y variations as well as other rare diseases/syndromes.
If you’d like to support our work, visit https://www.coltonsxycause.com/, where we have information on our “A Rare Affair” event as well as stories of benefactors and resources for families who have a child with a rare condition.
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.
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.
Colton’s XXXtraordinarY Cause: Our Mission Statement
Colton's XXXtraordinarY Cause is a 501(c)(3) non-profit, volunteer-managed organization. Our mission is to raise awareness about rare disorders, and to raise funds to support research and treatment for children who have been diagnosed with a rare disorder. We host special events to achieve this goal, and rely on the generosity of individuals, foundations, and corporations to bridge the gaps between financial needs and resources for our benefactors. Ultimately, we seek to raise the kind of awareness necessary to promote early diagnosis and intervention in honor of children like Colton.
OTHER COMMUNITY CONTRIBUTIONS
Not only do we love warming homes, but we love warming hearts.
Since our inception, Crown Energy has been an active participant and supporter of local community causes and events. And at the heart of all that we do is our own family, so of course our favorite charitable effort is Colton’s XXXtraordinary Cause, which we founded a few years ago in honor of our son.
Here are links to Colton’s XXXtraordinary Cause and other examples of our favorite charitable efforts:
Colton’s XXXtraordinarY Cause (coltonsxycause.com)
Erin Shanley Memorial 5K (benefits St Jude)
Ghost Stories Sponsor (https://www.astorservices.org/event/ghost-stories-2017)
Miles for Mac Sponsor (http://milesformac.com)
Sparrow’s Nest Rock the Nest Sponsor (https://sparrowsnestcharity.org/event/rock-the-nest-music-festival-2017)
Ryan McElroy Foundation (ryansfoundation.org)
Angels of Light (http://www.angelsoflighthudsonvalley.org)
Tunnel2Towers- Donated time and materials to install propane tanks for home build in honor of a disabled Veteran. (https://tunnel2towers.org/building-for-americas-bravest/stephen-k-valyou)
Scholarship Funds for locals schools, colleges (Maplebrook School, Pine Plains CSD, Marist, etc)
Sponsor several local youth t-ball, little league and hockey teams.
Designed, built, installed and donated a custom propane tank for the Millerton American Legion
A custom propane tank designed and donated to the Millerton American Legion.