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.
WHAT IS THE NYA:
At the Huntington's Disease of America's annual convention in Orlando, June 2000, a group of young children and young adults, with HDSA's support and encouragement, established the HD National Youth Association.
These young people's Vision Statement is that theirs will be "The LAST Generation of Huntington's Disease!" Each year the members of NYA elect peers as their Team Leaders who serve in that function for the fiscal convention year.
NYA members either have Huntington's Disease, are at-risk for the disease, or have a parent or sibling with Huntington's Disease. Their ages are 9 through 30. There are also four adults supporting the NYA; two with experience as a parent of a child/children with HD, one with experience as a caregiver and with children at-risk, nd one from the HDSA.
The support, love and encouragement that they share with each other is phenomenal and would melt anyone's heart! If you are a young person living with HD you are encouraged to try and attend an HDSA National Convention to join the other NYA members in the special events that they plan and for the special sessions the HDSA has put on the convention agenda for young people.
JOIN THE NYA:
If you are a young person living with Huntington's Disease and would like to join the NYA, you can obtain an application or join their message board at the following website:
Support The NYA:
You can help by:
- Providing information about the NYA to your HDSA Chapters, Support Groups and Centers of
- Excellence or any HD family with children.
- Start an NYA support group in your Chapter.
- Establish NYA Convention Scholarship Funds in your groups to help support NYA Members who need financial assistance in attending an HDSA National Convention
- Donate unique items to the annual NYA Silent Auction held at the HDSA national conventions.
These young people either have HD, are at-risk or living with HD. A lot of them help care for a parent with HD while going to school or working. Every year as many NYA members as possible try to attend an HDSA National Convention. The support and comradeship they are able to
provide each other helps sustain them through some pretty difficult times throughout the remainder of the year. There have been times one or more of these young people have hitchhiked across
country just to attend an HDSA national convention (that's how importantthese young adults feel attending a convention is).........as a parent that puts fear in all our heart!!
We are looking for support in helping to pay convention registrations fees, hotel expenses or a ride to and from the convention (or air fare). If your organization can help in anyway, please contact either Sue Leck or Jean Miller! We'll put you in touch with the NYA member looking for support. Or, if you prefer, private donations can be made by sending a check or money order made out to "HDSF" and marking the memo on the check
For NYA Scholarship and mailing to:
c/o Dave Hodgson
1526 Applegate Dr.
Naperville, Il 60565
NYA Adult Alliance Members:
Feel free to contact any of adult members who would be happy to answer any questions you may have about the NYA: