History of the NYA

The idea behind the National Youth Alliance began in June 2000, at the Orlando, FL HDSA National Convention. Children, teens and young adults who were affected by Huntington’s disease that would attend the annual HDSA conventions prior to this year understood the importance of having an educational program and activities set aside for the youth. The founding members wanted to start a youth group which would promote support, awareness and education for all young people, ages 9 through 29, who attended the conventions. The mission of the NYA has remained unchanged since then, to be dedicated to making theirs the last generation with Huntington’s disease. The founding members approached HDSA with the suggestion to begin an organization centered on the youth of HDSA. From this point on the National Youth Alliance was born. The newly formed NYA was advised by Jean Miller, and Dave & Sue Hodgson.

After a rocky first year, the dedicated advisors pushed forward to ensure the NYA would be known from California to the New York islands. The efforts by the advisors helped keep the organization growing throughout the years. From creating the brochure to the website, not one stone was left unturned to keep the NYA moving forward.

In 2003, the NYA held their very first silent auction in Houston, TX. This was the same year in which the scholarship fund began. Members voted to have funds distributed in such a way to establish the scholarship with support from HDSA. The first scholarship awarded was $3,000.00 for the HDSA National Convention in 2004. As it is set today, the scholarship remains in place for members who, otherwise, would be financially unable to attend.

The NYA talent show has blossomed into one of the biggest events during the convention weekend. The first was held in 2004 in St. Louis and has continued to grow, so much that the NYA has had to expand from small conference rooms to the amazing attendance we had at the Jacksonville, FL convention where rooms had to be opened up even larger to fit all of our supporters and guests. The talent show is comprised of musicians, singers, songwriters, leg wrestlers, and even comedians! 

The first NYA Day was held in 2007, and each year new and old members return to be surrounded by their peers to feel support, gain knowledge, and create lifelong friendships. Today the National Youth Alliance has more than 200 members nationwide and is growing monthly. The support that members and advisors have had from family and friends throughout the years has helped what once was a small group of kids flourish into amazing young adults, who are now able to share their experiences with future members. 


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