There have been numerous stories of families struggling with issues caused by having one or more family members struggling with Huntington’s disease. I’ve always wondered what an ideal support network might look like and if it’s possible to put together a self sustaining organization to service those needs.
Since April 2000 the mission of the HDLighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally we provide information that is vital to the the support of HD families. Where possible we will direct you to specialists in the your area of concern, but if we are able to provide better or more current information then you'll find it here.
Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old.
The failure of the Dimebon trial prompted me to think about how best to select drugs to move through the pipeline from preclinical research to clinical trials. It seems to me that knowing how the drug works, how it acts on a therapeutic target, is an important consideration in prioritizing potential treatments.
Fifteen year old Rylee is her mother's caregiver. She wrote this remarkable poem and allowed us to post it here. I think it's wonderful - Marsha
I had known since I was a kid that Grandma had had HD, and that I had a 25% chance of getting it, but felt that as long as my Mom was healthy, we were all safe. I never worried about it until the day that someone outside my family said "Do you think your Mom might have what your Grandma had?". I instantly realized they were right, and from that day I could not get it out of my head.
Dimebon was not successful in its Phase III trial in Huntington's disease patients. These results are disappointing but not surprising after the unsuccessful trial in Alzheimer's patients.
The take home message here is that in choosing drugs from the pipeline to move into clinical trials, we should give our strongest consideration to drugs where the mechanism is known. It was never clear how Dimebon might work.
The Phase III clinical trial for creatine is still enrolling. We have updated information about the trial below.
People at risk for Huntington’s Disease are interested in research which suggests how to live a healthy lifestyle that postpones disease onset as long as possible. One of the most common recommendations and the most solidly researched has been exercising to fitness. There are two reasons for this. The first is that the overall health benefits to the general population are widely known.
Researchers at the Mount Sinai School of Medicine in New York have investigated grape derived polyphenol extract (GDPE) as a potential treatment for Huntington's disease. They found promising results in a cell model, a drosophila model, and the R6/2 mice.
In previous studies, the authors investigated the bioavailability of GDPE and found that although it is metabolized in the gut, it does cross the blood brain barrier and can be detected in the brain.
Impaired energy metabolism has been shown to be a major pathology in Huntington's disease. The mitochondria, the cell's energy factories, have not been found to be intrinsically defective but are thought to be mismanaged in some way. A University of Central Florida research team lead by Dr.