At the Huntington's Disease Society of America's Annual Convention in Orlando, FL. June 2000, a group of young children and young adults got together an established the National Youth Alliance. These young people have made it their mission to make theirs the LAST generation of Huntington's Disease! Thirty young people signed up to participate in NYA the first few weeks after the group was formed. Today there are over 100 members representing 22 states! The National Youth Alliance is for anyone age 9 through 29 who is living with Huntington's Disease in their lives. The support, love and encouragement that these young people share with each other is phenomenal and would melt anyone's heart! Every one of the NYA members is exuberant and totally dedicated to their mission! The majority of these young people are at-risk for Huntington's Disease. Many, who while struggling with their own risk for being positive, are making sacrifices every day. Some have given up their dreams for a college education or career to help at home while others may be fortunate to be able to pursue their dreams and are either full time students or working on their career. About 20% of the members are young people who have tested positive with the Juvenile form of the disease. Some are pre-symptomatic while, in others, the ugly progression of the disease is clearly visible year after year. The rest of the NYA members are those who have tested negative, are young caregivers, or have a family member or a friend with HD.
NYA Mission Statement
- To provide a support network for youth with Huntington's Disease in their lives.
- To bring attention and understanding of this disease from the community.
- To help in any way we can to become the first generation without HD.
Every member of the HDSA National Youth Alliance exists to support each other and fight to be the first generation WITHOUT Huntington's through education and awareness. As such, many will become future leaders of the HDSA chapters!
Since the inception of the NYA, HDSA has done an outstanding job of providing resources and workshops geared to our young people living with HD at their national conventions. This special attention to our young people has helped increased awareness in the HD community that these children and young adults have a dire need for support from those that understand their special needs and issues.
The majority of the members of the NYA live in a home where finances are very tight due to one or more parent being unable to contribute to the household income because of having Huntington’s Disease or the fact that more then one family member has HD.
There are ways you can help the NYA members!