Among people with Huntington’s disease living in India, psychiatric problems are common but routine clinical follow-up is lacking, a study suggests, emphasizing the need for better symptomatic care. The study, “Psychiatric morbidity and poor follow-up underlie suboptimal functional and survival outcomes in Huntington’s disease,” was published in …
During college, I always joked with my friends that I would drop out of school to open a bar in Canada (I prefer their healthcare system). MIT was very stressful, and my reaction to unenjoyable situations is to want to escape. Based on…
The last few weeks have been somewhat trying for Jill. She has been plagued with giant hive welts. They cover her arms, legs, and torso. Sometimes her lips or eyes will randomly swell. She jokes, “People pay a whole lot of money to have puffy lips.” She hasn’t been able…
The first patients have been enrolled in a clinical study of the natural history of Huntington’s disease (HD) and its biomarkers, to better inform how to measure and monitor early signs of the disease and support future clinical studies. The SHIELD HD study, sponsored and led by Triplet…
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…
AFFiRiS’ C6-17, a candidate monoclonal antibody for the treatment of Huntington’s disease, is able to target and halt the spread of mutant huntingtin protein — the underlying cause of the neurodegenerative disorder — across cells, new preclinical data show. The study, “Inhibiting cellular uptake of mutant huntingtin using…
One of my recent columns was about the Huntington’s Disease Society of America’s annual convention. I participated in a few groups over Zoom because I have to be involved in every step of the journey. We have known about this conference for years because Jill’s mother tries to attend…
We live in Illinois, where the weather can be unpredictable. Some days we have perfect weather — 70 degrees and sunny — followed immediately by snow. We may not see the sun for days. When we moved here, we quickly discovered that you have to enjoy the beautiful days…
A Phase 1/2 clinical trial evaluating AMT-130 as a potential gene therapy for Huntington’s disease has “treated” its first two patients, uniQure announced. One person was given AMT-130 and the other a sham surgery as part of a control group. Both will now be followed for three months, after which a Data…
I am messy. I’ve always been messy. My desk at work looks like an explosion of papers. I love to read, so it’s not uncommon for my bedroom floor to have books scattered like leaves on the ground on a fall day. I also tend to buy the same product…
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