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  • Writer's pictureSharon McClellan Thomason

Huntington’s Disease: All About the Kids

Talking to kids about HD can be one of the toughest parts of the Huntington’s disease journey. It’s one thing to explain that Mom or Dad is sick; it’s quite another to explain that it’s genetic and that each child has a 50/50 chance of inheriting the disease. Fortunately, there’s a fabulous resource to help—Huntington’s Disease Youth Organization, or HDYO as it’s commonly known.

Right now, HDYO is gearing up for its annual North American HD Youth Camp at Camp Cedar Glen📷 in Julian, California, August 11-15, 2018. Camp applications are open until April 30, 2018, to anyone ages 15-23 from the United States or Canada who is IMPACTED by Huntington’s disease. Thanks to generous donations, the entire cost of travel, food, and camp is covered for up to 50 young people!

📷Chandler Swope, Director of Youth Services, says, “We hope that young people will leave camp feeling less isolated, more knowledgeable about HD, and feeling more supported.”

The five-day camp is about an hour and a half from San Diego, California, and includes lots of team-building, paddle boarding, ropes courses, canoeing, archery, and much, much more! Experienced professionals from HDYO, HDSA (Huntington’s Disease Society of America), and HSC (Huntington’s Society of Canada) will be on-site at all times to support the campers. Trained volunteers will also be there to help supervise and to share their own experiences with campers.📷

This is an amazing opportunity for young people! For more information and how to apply, please visit

HDYO has also partnered with Help 4 HD International again this year to offer youth days at our HIPE (Highly Interactive Participant Education) Day in Gainesville, Florida, on June 30, and at our fifth annual symposium on October 13, in Des Moines, Iowa.

Another tool HDYO offers is an interactive web site ( that is rich in resources for kids, teens, young adults, parents, and professionals. There is also a section for friends of young people impacted by HD as well as a section on Juvenile Huntington’s disease (JHD).📷

HDYO is an international non-profit organization that was launched in 2012. The idea originated in the summer of 2010 when Matt Ellison, the eventual founder, presented it at the Young Adults Working Group for EHDN (European Huntington’s Disease Network). HDYO is run mostly by young people impacted by HD. In its six years of existence, HDYO has developed a team of over 170 volunteers in a variety of roles. The volunteers include a board that oversees the organization, a translation team, forum moderators who respond to questions posted in the HDYO online forum, HDYO reps who spread positive HD awareness globally, and a feedback team made up of professionals who review content.

Please feel free to contact Chandler Swope with any questions: or 202-674-4848.

Remember: Enroll at before April 30th.

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