Huntington's Disease

[JeanEMiller]

I just joined this forum and from reading some of the posts I thought it might help to list several really good resources that may help provide answers to some of your questions. I just wished this forum would highlight the URL's so you didn't have to copy and paste ;-)

This URL is to a new website I did last month called "HD Video Awareness" besides many video clips on Huntington's disease personal and professional, there is a page for HD Internet connections

HD Professional & University or Non-Professional Organizations
URL: http://huntingtondisease.tripod.com/hdvideos/id19.html

On this link you'll find direct connections to the Huntington's Disease Society of America, the Hereditary Disease Foundation, the International HD societies, NINDS, Stanford University HOPES HD Project, the Huntington's Disease Advocacy, the Huntington's Disease Lighthouse [for the latest in HD research] and my website HD Links.

Besides educating yourselves as much as possible about Huntington's Disease it can be a tremendous support to be able to communicate with others who are also living with HD! Although there has been a lot of advocacy and awareness for this horrific disease, the average person still does not know enough about it and I'm sure a lot of you have found that once you mention the words 'terminal disease' most people get uncomfortable having any further discussion!

So, it's important you connect with others, no matter how you are involved with HD! The first place to look would be to find out if there is a local or nearby HDSA Chapter or Support group you might want to join. To find those:

HDSA Chapters: http://www.hdsa.org/site/PageServer?pagename=Locate_Chapter
HDSA Support groups: http://www.hdsa.org/site/PageServer?pagename=Support_Groups

Then there are many HD on-line support groups that you can visit 24/7! To find a list of all of those and information on how to join them go here: http://www.hdac.org/chat/index.php

If you are looking for information to find support or services for someone living with HD then in the USA your best bet is to local an HDSA Center of Excellence near you:
http://www.hdsa.org/site/PageServer?pagename=COE

There are Social Workers at most CoE's and at some of the HDSA Chapters who are there to help you find local resources, help with getting someone on disability, etc. The CoE's would also be the place to find a Genetic Testing facility near you if you want more information on the genetic testing for HD.

For young people living with HD there is the HDSA National Youth Alliance which is a DYNAMIC group of young people ages 9 through 29. Many are at-risk, some have tested positive, some have tested negative and some are relatives or friends of someone with HD. I'm proud to say I'm one of the original adult advisors to this group and for any young person living with HD there isn't a better place for you to find peers who truly understand and whose mission is to make theirs the LAST generation with HD! To check out the NYA go here: http://www.hdsa.org/site/PageServer?pagename=NYA

One of the best places to meet others living with HD is at a HDSA National Annual Convention! The HDSA conventions provide you with educational sessions, the latest in HD research from the researchers themselves, and the opportunity to meet and get to know other HD families. This convention is one of the best opportunities for young people to connect with the NYA and the HDSA has many events and educational programs for young people. The next HDSA national convention will be in Pittsburgh, PA. June 6th - 8th, 2008. The convention kicks off early on the 8th so its best to make plans to arrive the day before.....plus that Thursday night is always an annual get together for all the on-line HD groups! For young people who join the NYA [it's free] they can apply for a convention scholarship to help get them to the convention. For more info on the scholarship, check out the above link to the NYA. To learn more about the 2008 HDSA National convention click here:
http://www.hdsa.org/site/PageServer?pagename=Annual_Convention_Home_Page

My name is Jean Miller and my only daughter, Kelly, died from complications of Juvenile HD. If anyone is interested in reading "Our Story" you can do so here:
http://huntingtondisease.tripod.com/juvenilehd/id52.html

No matter where you are coming from living with HD just remember you are NOT alone! There are face-to-face groups and on-line groups here to help you where you can find valuable support from others who have lived with HD for many years or those just starting this journey who truly understand what YOU are going through!

Keep asking, positing and responding!

Love
Jean

[stulchinsky]

Dear Jean,

In addition to the contributions of others in this forum, you can find physician-developed and monitored information on Huntington's Disease here: http://www.neurologychannel.com/huntingtons/index.shtml

You can also read the stories of others dealing with Huntington's at this link: http://livingwith.neurologychannel.com/huntingtons-disease/

Best wishes.

[ndubak]

If you are positive with the Huntington gene, does that mean you will actually develop the disease?

[JeanEMiller]

If you have had the genetic testing for HD and have tested positive then, yes, at some time in the future you will develop symptoms of the disease. However there is no hard rule of when symptoms would start!

The best thing someone can do who tests positive if to become very proactively involved in their care. There are many supplements that have proven to be beneficial for those with HD and clinical studies have shown that healthy diets and execising can help delay the onset. There are also many clinical studies being done in Huntington's and your participation in those studies will only help our researchers come closer to finding the right combination of slowing down the disease or finding the cure!

You can check out the Huntington Study Group [HSG] for current clinical trials:
http://www.huntington-study-group.org

Download and read about all the latest and greatest in HD research in the most current issue of the HDSA The Marker Magazine:
http://www.hdsa.org/site/DocServer/HDSA07201_Marker_006.pdf?docID=3321

For information on research on supplements, diet and exercise, visit the HD Lighthouse:
http://www.hdlighthouse.org/treatment-care/index.shtml

Find a Huntington's Disease Society of America Chapter near you
http://www.hdsa.org/site/PageServer?pagename=Locate_Chapter

or call HDSA at 1-800-345-4372 and ask where the closest Chapter or HD support group may be.

I hope this helps answer your question. If someone gets genetic testing done at one of the approved Genetic Testing centers they should provide you with the answers to any questions you may have, beforre you test.

Love
Jean

[ndubak]

Thank You. We are consulting with a specialist as to what innovative drugs may be available and how to possible delay the onset of the disease.

[davidmulvaney]

Another site I have been reading is http://hddrugworks.org/ they are linked to the HD Lighthouse site http://hdlighthouse.org/