National Youth Alliance Advisors

BJ Viau

Minneapolis, Minnesota

My Mother, Debbie who passed away in March 2011 from Huntington's disease is my motivation, inspiration and hero which keeps me going every day to try to give back to others. I first started getting involved by holding “Hoopathons” at a local level to raise money and awareness for HD. If you are confused about what a hoopathon is…check out hoopathon.com. After attending the 2009 HD World Congress Conference in Vancouver, I became motivated to get more involved on a national and international level.  In 2010, I joined the HDSA NYA Committee and also helped create the Huntington's Disease Youth Organization (HDYO) (www.hdyo.org).  It is a great pleasure to stay involved in the NYA and I am looking forward to helping the NYA blossom into an even larger network of young people here to support others. 


Staci Cushenbery

Harper, Kansas


Lauren Holder

Winston-Salem, North Carolina


Misty Oto

San diego, california

My name is Misty and I am 35 years old. I have been involved with HDSA since I was 18 years old and was a member of the NYA for 8 years prior to achieving my alumni status. I am a member of the HDSA San Diego Chapter. My grandma, mother, aunt and brother have all been affected by HD and I have 3 siblings and countless cousins at risk. I attend convention every year to see the friends I have made through the NYA and make new ones. I strive to be a positive role model for those who are in the NYA as we continue to our efforts to make this generation the last to face HD.

 


 

Matty Ellison

Coventry, United Kingdom

I'm Matt, 25, from England. My dad had HD and that had a significant impact on me growing up. As a result I really developed a desire to help other young people impacted by HD and so I set up the Huntington's Disease Youth Organization (HDYO) in 2012 to offer support and education to young people impacted by HD around the world. I now work full-time on HDYO and as part of my role I get to work with the NYA to help the excellent young people on the board develop the NYA to be the best it can be for other young people in the US.