At least three major pharmaceutical companies are looking into potential gene therapies for Huntington’s disease — a rare inherited condition without a cure or a treatment to stop its progression. While several approved therapies exist to control the disorder’s physical and psychiatric effects, non-drug alternatives to alleviate the worst…
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…
My grandmother and my mom taught me how to cook. Growing up, I would make apple pies with my grandmother for the holidays, and I learned fractions by doing recipes with my mother. It amazes me how much of our lives is centered around what essentially is our…
We were settling down in the living room to relax after putting our daughter to bed for the night. I was sitting on the leather sofa with my legs curled up next to me. The setting sun was shining through the front windows, casting a warm glow across a wall…
The Huntington’s Disease Society of America held its annual conference in early June. Like many events these days, it was virtual, which made it super convenient to attend. I watched several sessions, including “Preparing for the Change That Will Come” and “Support Group for Caregivers.” I like to have a…
Austedo (deutetrabenazine) can be safely taken at higher than the maximum dose now approved to control involuntary movement in people with Huntington’s disease, an analysis of clinical trial data reported. These findings, “Evaluation of the Safety of Deutetrabenazine at Higher Doses to Treat Chorea in…
To this day, I have only talked to two younger people with Huntington’s who weren’t related to me. I know some resources could help me connect to others (like the HD Young Adult Conference), but I haven’t decided if I want to…
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.
On May 21, 1992, MTV aired the first episode of “The Real World.” The introduction to the show went like this: “This is the true story of seven strangers picked to live in a house, work together, and have their lives taped. Find out what happens when people stop…
A novel class of proteins, dubbed heat-resistant obscure (Hero) proteins, can protect other proteins from a variety of cellular stresses, and also can prevent the formation of protein aggregates typical of Huntington’s disease and amyotrophic lateral sclerosis (ALS). The new protein class was described in the study “…
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