Community

Welcome to the community section of HDLF.org. This section is intended to help guide you through the wealth of information available on the Internet for families affected by Huntington disease.

We invite you to try out our active message board at HDLF Forum. It's a public message board so that you can chose to just read what's there or actually participate by helping others or getting answers to your own questions.

FDA Hearing on Tetrabenazine scheduled for December 6, 2007

We have received confirmation that the FDA Advisory Committee hearing for Tetrabenazine (Peripheral and Central Nervous System Drugs) will take place on December 6, 2007 from 8:00 a.m. – 5:00 p.m. at the Sheraton College Park Hotel in Beltsville Maryland. The Open Public Hearing which provides patients, caregivers, physicians, and advocates an opportunity to address the Advisory Committee will take place from 1:00 – 2:00 p.m. Ideally we would like to pack the Ballroom at the Sher
HDSA
sluis@hdsa.org

Testing negative and remaining positive

%TR% My mum has had HD since I was about 14. She was diagnosed when I was 16. The week she found out she was positive with HD I found out I was pregnant (not a pleasant week!) but from then on I have lived at risk of HD . There was talk about me having an abortion, I guess for two reasons, age and the HD gene. I wasn’t prepared to terminate the pregnancy so from that point forward my at risk status become a big part of my life and over time it became more powerful. Over the years I alw
Michelle

Testing, my own personal roller coaster ride from .....

%TR% I am writing this in Mid October of 2007. Six years ago at this time I had a new baby who was just a couple of weeks old. I had decided to be a stay-at-home mom, and life was going great. I had never heard of Huntington’s disease and to my knowledge we didn’t have any medical issues in our family. Little to my knowledge, this turned out to be the time my life was about to take a roller coaster ride that was the most frightening ever. With more turns and spins than I would ha
DCB

New Virginia Chapter of HDSA is Underway

Dear Friends in the HD Community, My wife, Karen, and I have decided to attempt to organize a Virginia Chapter of the Huntington’s Disease Society of America (HDSA) to support our local HDSA Center of Excellence (COE) at the University of Virginia’s Department of Neurology. We are hoping to have the chapter operating fully in two or three years after achieving affiliate status in one or two years. Before we can achieve affiliate status, we are planning to organize two fundraisin
Tim O'Neil
toneil@pediatricassociatespc.com

Juvenile Huntington's Weekend September 2007

It was a strange feeling going to the JHD weekend this year. My son Michael and his friend Bobby had both passed away and it was a different venue; how could it be as good? Jamie (who had been one of Michael's carers), my daughter Kirsty and I, left Girvan at 1:30 pm for the the 150 mile journey. We had hoped to be at the Calvert Trust in England by 4:00 pm. We had the satellite navigation system so getting there should not have been a problem. Unfortunately, 'shouldn't' and 'wouldn't'

Gordon Robertson

Mandate for Public Access to NIH-Funded Research Poised to Become Law

Full U.S. Senate Approves Bill Containing Support for Access To Taxpayer-Funded Research Washington, D.C. – October 24, 2007 - The U.S. Senate last night approved the FY2008 Labor, HHS, and Education Appropriations Bill (S.1710), including a provision that directs the National Institutes of Health (NIH) to strengthen its Public Access Policy by requiring rather than requesting participation by researchers. The bill will now be reconciled with the House Appropriations Bill, which contain
Marsha L. Miller, Ph.D.
Marsha@hdlighthouse.org

Rikki's story

%TR% My Story with Huntington's disease began in 1979, when I met Rikki's father. I was 18. We didn't stay together very long because of his behaviours, which I learned later were often typical of HD. For years I just thought he wasn't a very nice person. During the time we were together he once told me his father had died of Huntington's disease, but he didn't explain much and I had no idea of it, so I didn't ask further & just accepted it. Never once did I consider HD or its consequences.
Myrna

Testing my two children for JHD

%TR% I would like to share with you our experience with genetic testing. My husband and I adopted two children who were at risk for HD from their birth mother. We knew the risk, but we figured this would be something we would deal with in adulthood. When our children began having problems and doctors were putting them on medications without diagnoses, we asked, "What is going on? Why these medications: What are you treating them for?" Finally, we were referred to genetics doctors and they
Amy D.

Testing Positive: Planting a Lemon Tree

I come from a family (at least my mother's side of my family) who deals well with stress. They take the punches of life as they come, and in that I am so grateful. I don't know that I would have been able to deal with the results of my testing without the strength they ingrained in me. %TR%As most people who go through the process, I went in for the genetic counseling, weighing the pros and cons of getting tested for Huntington's Disease. I had known since I was 15 the disease ran in my fami
Lauren

An Overview of Testing for Huntington's Disease

Confirming a diagnosis The development of the DNA test has been very useful for confirming a diagnosis of Huntington’s Disease that a physician may make based on clinical signs. The DNA testing is especially helpful for those with earlier or later than average onset as well as when someone develops HD without a family history. A Canadian study reported that a quarter of those who tested positive were unaware of any family history of Huntington’s Disease. The reasons for this wer