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.

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 4

C?ndida C?ndida is at-risk for HD. C?ndida’s home was one of the ones who didn’t have running water or cooling! She offered to let us stay in her home for the remaining 12 days. This was a very humbling experience for me but worked out great to be our base camp. She would go into my bedroom before I retired to bed and fumigate it and then 15 minutes later would sweep up an entire dust pan of bugs. Her bathroom contained two barrels of rain water. When you showered each mor
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 3

After four days in Medell?n we boarded a plane for Barranquilla. I couldn’t wait to see firsthand the Colombian HD Jails. I had been piqued about the reports of abuse in Colombia after meeting Clara Giraldo, Ph.D. at the 2005 HDSA convention. She had just finished an insightful dissertation comparing the different caregiving styles and traditions between the metropolitan ones in Medell?n and the rural ones in JDA. I was appalled when she showed me an unbelievable picture of one of the
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 2

Three additional days were spent going home-to-home to visit families with HD to answer their questions and to give them the first information on HD they had ever received, in Espa?ol of course! The majority of the family members Clara and I visited were all professionals- doctors, lawyers, dentists, and accountants, in their 40’s. Most had never married and chose not to have children who they could pass HD onto. Most were also still living with their parents where everyone contribute
Phil Hardt

Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 1

Preparing to leave Prior to embarking on my first humanitarian mission I went to an immunization specialist who helped me work out which vaccinations I needed to take before I left and which pills I needed to take while in Colombia to avoid getting sick. Prior to my appointment with the immunization specialist I also printed out pages on Colombia and current recommendations from the Centers for Disease Control (CDC) website. My arms were sore for weeks after getting immunized and some of th
Phil Hardt

A Matter of Perception

We have all heard the saying that life is what you make it but many people do not realize that the way they perceive things plays a major role. I read a story once about a man who decided to test his young niece with the half glass of water to see if she was an optimist or a pessimist. The Uncle set the glass in front of her and asked if it was half empty or half full? The girl answered that it would depend on whether you were pouring it (half full) or drinking it (half empty). And with that sa

Sub Cortical Front Dementia in Huntington's Disease

There is a very pressing need to frankly discuss one of the most debilitating symptoms in the neuropsychiatric sequelae of “softer” symptoms in Huntington’s Disease- sub-cortical “frontal” dementia. Unfortunately, since there are far more patients with Alzheimer’s Disease (AD) and the cortical dementia associated with it, virtually all medical professionals recognize it more easily and disappointingly assume that person’s with other neurological diseases
Phil Hardt
phardt1@cox,net

Relocating

There comes a time for many of us when we have to leave our homes and neighborhoods in order to seek out better medical care as our HD progresses. This is much more common for people like me, who live in small isolated places, to have to move to the bigger towns and cities to get the support and understanding that we need. As well as a need to be around other people with HD who are just like us. When you are the only person with HD in your town, it is a very lonely place to be. For myself, it

Advocacy opportunity for Stem Cell Research

Reposted from HDCaregivers Do you remember that Pres. Obama said that the NIH stem cell guidelines would go under review? Well as part of that review process, YOU are invited to register your opinion with the NIH about what you'd like to see as the guidelines for stem cell research. Don Reed's family was at the White House when Pres. Obama signed the stem cell bill that reversed federal funding for stem cells. If you want to read up on why it's important that you participate, you might w

Jean Miller

Letter to President Obama on H.R. 678

Dear President Obama, I saw an article on CNN.com today about “Weeding the budget of $17 billion”. I agree this is necessary but I’m scared it will have a major impact on many lives, mine included. I have been married for 26 years and I have Huntington’s Disease. Sadly, many married people in the HD community are resorting to getting a divorce just so the person with HD can qualify for Medicaid and get treatment. Let me explain. HD is like Alzheimer’s, ALS (

Patty

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