WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Dear Friend, Yesterday, President Bush signed the Genetic Information Nondiscrimination Act of 2008 (H.R. 493) into law following an overwhelming show of support for the bill in Congress. With a 95-0 vote in the Senate and a 414-1 vote in the House, GINA has been publicized by lawmakers as the first major civil rights act of the 21st Century. The law will protect the privacy of millions of Americans, making it illegal for health insurance companies to use information from genetic tests to determine premiums or reject coverage as well as making it illegal for employers to reject job applicants...

Many of the NYA members had the opportunity to meet Dr. Janet Williams on the HDSA NYA Day in Pittsburgh where she discussed the study "Experiences of Teens Living in the Shadow of Huntington's Disease" that was published November 2007 and the importance of young people helping to further this research by participating in the University of Iowa's HDSA Center of Excellence HD Family Study.  Below is information on that study.  If you are interested in helping all of the professionals, world-wide, who work with HD families better understand what is like for all young people living in a family...

HELP...the published article doesn't appear in the format or font I keep adding it as like the bottom of the article shows up on top, top on bottom,etc; any sage words of advice on how to post an article without the format being changed? Below is from a handout we have describing this FANTASTIC group of young people....the NYA!  Dave & Sue Hodgson's and Jean Miller are proud to say we are the Adult Advisors to the NYA and are always happy to answer any questions you may have!    About the Huntington's Disease Society of America's National Youth Alliance (NYA) "Dedicated to becoming...

Are you under 30 and want to make a difference in the hd community? The National Youth Alliance is a group for youth (ages 9 - 29) who are affected by Huntington's Disease in their lives.  NYA’s Mission: Provide a support network for youth with HD in their lives Bring attention and understanding of HD to the community Help any way they can to become the first generation without HD. (www.hdsa.org/nya) This year the national youth alliance stepped up and became a virtual chapter.  Becoming a chapter means that we need a board and we held elections at the convention and i am very...

  Establishment of HDSA's National Youth Alliance Virtual Chapter [NYA-VC] At the Friday, June 6, 2008 NYA luncheon during the HDSA National Convention in Pittsburgh members of the NYA were provided the draft of the by-laws and groundrules that would be applicable to the establishment of a HDSA sanctioned National Youth Alliance Virtual Chapter.    All NYA members who were interested in running for the board of directors for the NYA Virtual Chapter had an opportunity to submit their names as candidates at a meeting that was held on Saturday morning, June 7, 2008 to be voted on by all the NYA members who were present. A lot of members were interested...

The information on how anyone, ages 9 through 29, living with HD can become a member of the HDSA National Youth Alliance was shown under a "blog" on this community page.  I'm also adding it as an article to help people find it. The HDSA NYA membership has grown significantly since its inception at the national convention in Orlando, Florida in 2000.  Since many of the past members of the HDSA NYA do not use email and/or participate on the Yahoo NYA Message Board, the HDSA looked  at ways to keep all of the members of our youth community better informed on...

The SSDI and Medicare bill that we've been working on has been introduced to Congress.  Now we need Representatives from across the country to jump on board and co-sponosor H.R. 6259.  For more information and to find out how you can help, visit this link http://www.hdsa.org/living-with-huntingtons/advocacy/current-initiatives.html...

Since HDSA NYA Membership Applications have been submitted directly to the HDSA, new NYA members may not know how to join the Yahoo NYA Message board so this article is to tell you how you can join! NOT A YAHOO MEMBER? You'll need a Yahoo email address. If someone currently does not belong to Yahoo you'll have to join, it's free:    Go to http://groups.yahoo.com/  Then click on "mail" at the top of the page and fill out the questions.  If you don't want Yahoo to have your permanent email address, use one of your alternative address where you can check mail, like...

Since several members of the HDSA National Youth Alliance have asked questions about the 2009 NYA convention scholarships I am hoping the below will answer any questions people may have about this very important scholarship fund!  Applications for the 2009 NYA Convention Scholarship will not be made available until early 2009.  If anyone would like to take a look at the 2008 Scholarship Application, to see what information is typically required, please see: 2008 NYA Convention Scholarship Application About the NYA Annual Convention Scholarship Fund Each year at the HDSA National Convention the NYA holds a Talent Show on Friday night and...