So which is worse: a long, drawn-out illness or a sudden, unexpected death? As the caregiver of a loved one with Huntington’s disease, I’m dealing with someone who is going to be suffering for a number of years. What my wife, Jill, will endure will not be a walk…
While traveling to a recent event on the T, greater Boston’s public transport system, I felt as if I were in a generic movie about a city-dwelling 20-something. I love living in Boston. While it is not as big as Chicago or New York, after…
The mini pig model of Huntington’s disease not only has a similar brain anatomy to humans, but also shows the slow and age-dependent neurodegeneration and weight loss that’s characteristic of the disease, according to a recent study. These features make it an advantageous model to use in preclinical studies…
Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. Disorder: The Rare Disease Film Festival strives to eventually host a film about every one of the nearly 7,000 rare…
Q-Motor, a promising motor-assessment tool for adults with Huntington’s disease, also provides non-invasive, easy, and sensitive measures to gauge motor function changes in children and adolescents, a study shows. The data highlights Q-Motor’s potential to detect subtle motor changes associated with Huntington’s disease in at-risk youth. The study, “…
Author’s note: This column is for anyone with Huntington’s disease or their family and friends. Dear Huntington’s community: Many of us don’t know each other, but we are bound by our suffering, heartache, pain, sorrow, and grief. And also by our hope, love, and mercy. We are linked together by…
Stem cells created from cells taken from juvenile Huntington’s disease (JHD) patients showed a delay in developing into mature neurons, but one that is reversible, a study reports. The study, “Characterization of Neurodevelopmental Abnormalities in iPSC-Derived Striatal…
PIGBOS — a newly discovered mitochondrial microprotein involved in a cellular stress-response mechanism called unfolded protein response (UPR) — might be a treatment target for neurodegenerative diseases like Huntington’s, a study suggests. The study, “Regulation of the ER stress response by a mitochondrial microprotein,” was published…
The first time I met Jill’s father was interesting. I hadn’t met someone with Huntington’s before, but Jill had told me all about it. Huntington’s was a movement disorder, and she had a 50 percent chance of inheriting it. I researched Huntington’s before meeting Jill’s father, but seeing the…
Some moments are so perfect that you wish time would stop so that some part of you could live in that moment forever. These moments can be significant milestones, such as receiving word that you’ve been accepted into your dream school or hearing that you landed the job…
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