Welcome to The
Huntington's Disease Society of America's
National Youth Alliance
"Dedicated to becoming the first
generation without HD"
What is the NYA?
The National Youth Association is for people ages thirty and under with Huntington's disease in their lives. This could be a pHD (person with HD), somebody at risk, a caregiver, a friend, etc. We are here to support each other, and fight to be the first generation WITHOUT Huntington's.
Our Mission:
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 Huntington's Disease?
Huntington's Disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual’s ability to walk, think rationally, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington’s Disease profoundly affects the lives of entire families: emotionally, socially and economically.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are “at risk” of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.
Early symptoms of Huntington’s Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50-50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals “at risk” elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington’s Disease and its effects upon different individuals. By continuing to increase our investment in both clinical and basic HD research each year, breakthroughs in treatment – and a cure – will be forthcoming.
NYA News and Updates
2/25/02:
For more information on this great opportunity, visit: http://hdlighthouse.org/see/index.html?/see/notice/star02.htm
A weekend retreat will be held just for you, designed by your At Risk Peers,
to address your unique concerns.
“This was a life changing experience that opened doors that I thought were
already opened” (2001 Retreat Attendee)
The Retreat is for young adults, ages 18 to 40 or so, non-symptomatic, tested or untested or chosen not to test. Each At Risk person may bring one adult (spouse, life partner or friend), if desired.
We will discuss topics like:
10/25/01:
HD Kid's CHAT!!!
I just wanted to let everyone know that Kids Chat is going
to be this Friday Night at 7:00 pm Central Standard Time. We have
regular chats on Monday nights at 7:00 pm, but the Kids Chat is held once a
month. It is the second Friday of every month. We let
in kids of all ages in, this means from 2 to 110 years old.
What happens is this: If a young person is in the room the adults are there to
answer questions and support the younger ones. If
no kids come then we have a regular chat. We have persons with HD, persons At
Risk, caregivers, family and friends that come to
talk, there is no set rule to get in except that you want to talk about HD. (Now
I know most of the kids don't, but this gives
them the opportunity to open up and talk to others if they need to.) There
are times when we joke around but we are always there if
you have a question or problem you need to share.
You have to be a member to join, but it is FREE and easy to do so. You also have
to have java to join in. Sorry Web TV users. Wish
we could get you all in there. So if you can, come join us this Friday night in:
http://clubs.yahoo.com/clubs/huntingtonsatrisk
10/22/01: Marc Church, one of our members
that we all know and love, is having a tough time. he just had
surgery done for a wound on his leg. It's healing very well but his
Mom said Marc has been a little down lately. Please take a moment to send
him a letter of encouragement or just a quick hi! His new mailing address
was sent out on the NYA discussion...if you need it please contact either myself
or Jean Miller.
Here is a list of Candidates for the NYA Leadership Crew. If you are a candidate, please get your info in pronto! (Please send it to the discussion group for all to read.) Also, NYA is lacking a Mission Statement. If anybody wants to contribute ideas for one, please send those to the discussion as well.
CANDIDATES
Name
Age (*not known/need)
Hannah Ash
11
Cathy Colyer
20
Aaron Colyer
17
Shane Colyer
15
Amy Hearn
*
Shana Martin
21
Frannie Mayberry
* and NEED HER phone or email
Sherry Roberson
*
Corey Stewart
11
Justin Voss
20
Remember the due date:
ACTION-CANDIDATES
Every candidate listed above is requested to send an email
with the following to [email protected]
(a) Confirm you want to run in the final election
(b) Submit a brief bio reflecting a little information about why
you feel you would be a good person to
represent the NYA
in the below Team Leader role.
DUE DATE:
All candidates are requested to provide this information
on or before 26 October 2001. If you don't respond, your
name will have to be removed from the list of candidates.
After every candidate submits this information, all the NYA
members will vote on 4 to 5 people, considering a good
cross representation of ages to best represent every NYA
member.
8/6/01: Welcome to the NYA website guys! I
want to encourage all of you to write your personal stories and get those sent
to me ([email protected])
so I can put them up here. If you have a picture to attach to the story
you send, that would be great! REMEMBER...you do not HAVE to have a story on
this site, it's totally voluntary. If you do tell a story, your name is
not required.
Another thing...if anybody does NOT want their names by their
picture on the picture page, please drop me a note. Feel free to send any
more ideas or input you have for this website!
Web Design By:
Shana Martin
& Michael Betz