Living with the knowledge that a terminal illness as devastating as Huntington's is in your life is very difficult for
anyone. However, for the many young people living under the veil of inheriting this disease the special situations
they have to face not only affect their "developing" years but the rest of their lives as well.
Some of the responses on this website are to questions I asked members of the HDSA National Youth
Alliance [NYA] to answer early in 2002. As you will read, some of these are very difficult and sensitive issues
and the NYA members who responded put their hearts and souls into their answers. Each one of those who responded agreed to
share their experiences with others in hopes that their answers will help other young people living with Huntington's Disease
understand that they are not alone.
Their answers appear exactly as they wrote them, I did not correct spelling or grammar. Where known, I have
updated the brief introductory on each person as of 2008 on the print version [see above].
For anyone who has attended a Huntington’s Disease Society of America national convention, you are aware
that since 2002 the HDSA National Youth Alliance membership has grown tremendously! Recognizing the needs of these young people,
the HDSA has incorporated special educational sessions for them in the convention program each year.
In addition, HDSA fully supports the NYA annual Talent Show and Silent Auction held at the convention. These
events are where the members of the NYA raise money for HDSA HD Research Projects and to support the annual NYA Convention
Scholarship Fund they established in 2003 to help send other young people from HD families to a national convention each year.
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The NYA Mission is to make theirs the FIRST generation without HD by working together to
create awareness and education on Huntington’s Disease and to provide support to each other as well as to all young
people living with HD. They are the future educators, researchers and leaders of tomorrow’s Huntington’s
Disease worldwide programs and organizations.
When these questions were asked early in 2002 there wasn’t any research done on how living with Huntington’s
Disease affects the children and young adults from HD families. Thankfully, in the past few years, HD professionals from around
the world are recognizing those need. But we’re not there yet in providing support for all young people from Huntington’s
Disease families.
Besides the research being done, programs need to be put into place to support the special needs of these young people.
Are you talking to the young people from HD families and looking within your own HD organization to see what you
can do to help?
If not, why not?
With heartfelt regards,
Jean Miller, Sue & Dave Hodgson - HDSA National Youth Alliance Adult Advisors
For information on the NYA please visit www.hdsa.org/nya |
