Speaking Out ~ Living With HD

About NYA

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About the NYA

The HDSA National Youth Alliance  (NYA) is a group of young people, ages 9 through 29 living with HD.  They either have the disease themself, are at-risk, care for a parent with HD, have a child at risk, have tested negative, or are a "friend" to HD.

The NYA is fully supported through the Huntington's Disease Society of America's non-profit organization.  You can learn about the HDSA through their website under "HD Links".

Every child of a parent with Huntington's Disease is at-risk of having HD themselves. Children as young as 2 years old can have the Juvenile form of the disease.  The Juvenile form of HD is more devastating then the adult onset form because symptoms start earlier, are more severe and their life expectancy is shorter.  Many young adults do not show symptoms of the Juvenile form of HD until their early twenties.

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, many young people living under this veil of inheriting the disease the special situations they encounter will affect not only their "developing" years but the rest of their lives as well. 
Join the NYA
If you are a young person living with HD and would like to join the HD National Youth Alliance, whose goal is to make theirs the LAST Generation With HD, please see the
"About NYA" page.
Thank you!
Jean E. Miller

NYA Adult Advisor
Clearwater, FL

 " If you have no where to go,

look for me and I'll give you a way out.
If you need support, I'll be right there
on the sidelines,
cheering for you until I lose my voice.
If you ever need me, but don't know
where I am, look behind you;
I'll be there ready to push you back up
if you start to fall behind."
~Rachel Turner
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 29.  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, and 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 the special sessions the HDSA has added to the convention agenda for young people.

Support The NYA:
You can help by:

Providing information
About the NYA to your HDSA Chapter, Support Group, HD Centers of Excellence or any HD family with children or young adults. 

Start an NYA support group in your Chapter.
Establish an NYA Convention Scholarship Fund in your group to help send NYA
Members (who need financial assistance) attend the annual HDSA National
Silent Auction Donations 
Donate unique items to the annual NYA Silent Auction held at the HDSA national
convention each year.  Write me if you'd like more information on donating an item. 

Convention Support:
In reading the answers to these sensitive questions you will see where a lot of these
young people 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 important these young adults feel attending a convention is).........as a parent that puts fear in all our heart!!

This is why starting a Convention Scholarship Fund for NYA members in your HDSA Chapter or Support Group is so important....to help the members make it to the convention.  Believe me, many of these young people are struggling, and would greatly appreciate
your help.
NYA Adult Alliance Members:
Feel free to contact any of NYA adult members who would be happy to answer any questions you may have about  the NYA:

Leck, Sue

Phone   630-717-5863                                                Cell:      708-280-2970

Marsch, Bill (HDSA)
Phone:  732-821-5522 Ext. 35

Miller, Jean
Phone:  727-536-4579
Cell:      727-420-9533
Soleau, Charlene
Phone:  248-887-4670