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.

World Congress on Huntington's Disease

WORLD CONGRESS ON HUNTINGTON’S DISEASE September 12 – 15, 2009 The Westin Bayshore, VANCOUVER, BC Huntington’s disease (HD) researchers, clinicians, and members of the HD community from around the world are invited to participate in this unique meeting. The scientific program features presentations on recent advances in genetics and disease mechanisms of HD, recent approaches to developing experimental treatments, and the latest findings from clinical trials. The Congres
The Division of Continuing Professional Development at the University of British Columbia

A Special Gift: The Rose

I Am A Rose %CRY% I'm 51 years old, and five years ago I was diagnosed as being in the early stages of Huntington's Disease. This was not an easy time for me. I was dealing with both the practical loss of not being able to do everything I have always been able to do, but also dealing with emotional grief as well, because I was going through a true grieving experience, grieving the loss of me. It was a scary time as well, feeling that the future was scary. My grief was very real, as it should h

Barb Marshall

A Day on Capitol Hill

We signed up to be HDSA’s advocates a few years ago. We sent in our letters to elected officials some of the time when we would receive our HDSA advocacy alert emails. We recruited friends and family to contact their legislators regarding GINA (Genetic Nondiscrimination Act) and were delighted when it finally passed. When the HDSA advocacy team made H.R. 678, the Huntington’s Disease Parity of Act of 2009 a priority last year (original name, but H.R. 6259 in 110th Congress), w

Tim and Karen O'Neil

A Day in the Life, an HD Experience, Charlotseville, VA, April 18th

UVA’s HDSA Center of Excellence will host their annual conference on Saturday, April 18 at Zehmer Hall Conference Center on the University of Virginia campus in Charlottesville, VA. The conference will run from 8:30am to 4:00pm. Featured speakers will include Katie Moser, Madaline Harrison, M.D., and Sue Drumm, J.D. The conference is cosponsored by the UVA HD program and the Washington D.C. Metro Area Chapter of the HDSA. There is generally a small fee to attend the program which inc
Tim O'Neil
toneil@pediatricassociatespc.com

Confronting Fate

written April 1998 I had grown up with the knowledge that Huntington’s Disease ran in my Father’s family. It was never a secret. My parents divorced when I was three. I did not see my Father again until I was nineteen. I was raised by my Mother and new Dad. Thousands of miles away from my Father, two older sisters, and the effects of Huntington’s Disease. The word held little meaning in my life until recently. When I was a child I was told HD was something I would neve

A Long Time Ago

We wanted to know. It was 1991. If Karen’s Huntington’s Disease gene linkage test was positive, we would plan our life together accordingly. If the test was negative, we would be relieved and plan our life together as any other twenty-something couple. We met in the mid 1980s and were married in 1989. Karen’s paternal grandmother passed away from Huntington’s Disease (HD) a few weeks after we met. Karen told Tim about her grandmother’s disease at that time a
Tim and Karen

HDSA Center of Excellence at UCLA presents the Hope and Cope conference

The HDSA Center of Excellence at UCLA presents: HOPE AND COPE: Living with HD while working towards a cure, an educational symposium for patients and families living with HD. Featured presenters will include: Dr. Susan Perlman, Dr. Yvette Bordelon, and Alice Wexler, author of “The Woman who Walked into the Sea.” In conjunction with the HDSA-LA Annual Membership Meeting Sunday, February 8, 2009 10:00 am – 3:00 pm The meeting will take place on the UCLA campus
HDSA COE at UCLA

My First Christmas in Heaven

%TR% It’s my first Christmas in Heaven and I could not ask for more For I am seeing with my own eyes that which I have only read about before Other loved ones that have gone before; I have waited so long to see Were all gathered round, waiting there for me The reunion so blessed, filled with joy and sweet release Compared none at all, to when I met the Prince of Peace Oh I knew that it was my Jesus, as we stood there face to face Tears of joy began to fall, as He wrap
Julie Sando Teuber

Faith

There are many things in life that happen over which we have absolutely no control. Huntington's Disease is a very good example of that. None of us would ever choose this path which life has sprung on us. One of the lessons that I have learned in this life time is that a little bit of faith can go a long way. We all have faith in different things and to varing degrees. The opposite of faith is worrying about all the things that have or could go wrong. A certain amount of worry is a healthy t

My Friend, My Hero, My Lorna

This tribute to my best friend Lorna is way overdue. She is one of the kindest, most amazing people I have ever met. To know Lorna is to love Lorna; one just can not help it. I first met Lorna at the BC Lions Camp Squamish at a Huntington's camp years ago. We were instant friends and as we shared our hearts and souls with each other, we discovered we had matching baggage when it came to our past experiences. %TR% The fact Lorna also has HD gave us an amazing inner understanding of living wit