HDYO. Also known as Huntington’s Disease Youth Organization. A non-profit created to provide a base of support and tools of education for youth (up to age 35) impacted by Huntington’s. Globally. That is how wide HDYO’s reach is.
What is Huntington’s Disease exactly? We have all heard about it at some point in our lives but, I’m sure like myself, you were never sure exactly what it was.
Huntington’s Disease, otherwise known as HD, is a genetic, neurodegenerative disease that effect’s people’s cognitive abilities, motor abilities and creates behavioral changes. Currently there are no efficient treatments or cure. In a household if a parent has HD, each child within the family has a 50% chance of inheriting the disease.
Chandler Swope, Director of Youth Services, was hired in 2014 to launch the first professional youth service for young people and families impacted by HD. This program is free for those who would like to utilize it. The community for which she newly found herself in is one of the most powerful she’s seen, “Their ability to always find hope and maintain a great spirit is infectious.”
HDYO was formed in 2012 by Matt Ellison, BJ Viau and a group of young people from around the world who were impacted by HD. They realized there was a need for age and stage appropriate information for young people living within HD families. With the founding came camps. Camps that provide safe havens with educational opportunities to learn more about HD, and to also get peer and professional support.
Many who attend the camps have undertaken a great deal of caregiving responsibility and the camps are a break for them. Research has shown that young people that attend these camps see an increase in self-esteem, feel less isolated and leave having a better understanding of the disease. HDYO’s camps are 100% free to all who attend.
On Thursday, May 2nd from 6:00-9:00pm Nora Lee is working with this great, pioneering organization to bring awareness and support to the front of the conversation. Taking place at the Backroom at Capo Deli, tickets can be purchased here.
Take a cue from Swope, “I can’t fix all the problems, but they deserve someone to consistently show up.”
Photography by Brady Scot Photography