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Huntington's Disease Society of America's
National Youth Alliance (NYA)
"Dedicated to becoming the first
generation without HD" |
At the Huntington's Disease Society of America's [HDSA] 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.
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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! |
NYA Adult Participation
There are four adults supporting the NYA; one with experience as a parent/caregiver for a child who had Juvenile HD, two
with experience as a caregiver for a spouse and now with one child with HD, and one represents HDSA National.
HDSA Youth Support Groups
For those NYA members who are fortunate to be able to attend an HDSA National convention, the support and comradeship they
receive there helps sustain them through some pretty difficult times throughout the remainder of the year. The rest of the
year, the NYA members support each other through an on-line discussion group.
Many of the HDSA Chapters either have started or plan to start Youth Support Groups. If you are interested in starting
a youth support group for your Chapter, please contact Mynelly Perez at HDSA 1-800-345-4372 Extension 214.
NYA Scholarship & Fund Raising
Each year at the HDSA National Convention the NYA holds a Talent Show on Friday night and a Silent Auction at the Awards
Banquet on Saturday. For the Silent Auction NYA members collect items and/or items are donations by HDSA Chapters, Support
Groups, families or friends, like you! Each year, the money raised has been given by the NYA to the HDSA for HD research under
the matching fund program, which triples the amount donated!
Since attending a HDSA national convention is so important to each and every one of the members of the NYA, in 2003 they
voted to set aside 1/3rd of the funding they raise to establish an annual NYA Convention Scholarship Fund. This
scholarship helps kids and young people from Huntington’s Disease families attend the HDSA national convention each
year that, otherwise, financially could not afford to attend. |
Support the NYA Scholarship Program
In 2008 there were 25 NYA members apply for, and received, a scholarship! If you would like
to make a contribution to the NYA convention scholarship fund for next year, please mail your check or money order, payable
to the "HDSA NYA Convention Scholarship Fund" to Mynelly Perez at the below address, or you can make an online contribution
here: www.hdsa.org/nya.
Become a Member of the NYA!
If you, or any young person living with HD you know, is interested in becoming a member
of the NYA please visit the HDSA NYA web page for a membership application: www.hdsa.org/nya
About the Huntington’s Disease Society
of America [HDSA]
HDSA is a national non-profit voluntary health agency dedicated to finding
a cure for Huntington’s Disease. The HDSA mission is committed to finding a cure for Huntington's Disease (HD) while
providing education and services to those affected by the disease and their families.
For more information on Huntington’s Disease, please contact the HDSA
or visit their website:
Huntington's Disease Society of America
505 Eighth Avenue -Suite 902
New York, NY 10018
Phone: 212-242-1968
Toll
Free: 1-800-345-HDSA (4372)
Fax: (212) 239-3430
General Inquiries: hdsainfo@hdsa.orgWebsite: www.hdsa.org
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