Good Decision-making Is an Important Trait for Caregivers

My wife, Jill, and I recently bought a new car. While this might not seem related to the Huntington’s disease community, it actually is, because it involves decision-making, a big topic for families who deal with the disease. I’m thrilled about the new car, as well as another important development…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

The first two patients have been enrolled in the high-dose group of a U.S. clinical trial testing the safety and efficacy of AMT-130 as a potential gene therapy for Huntington’s disease. “We are very pleased with the progress that we continue to make in this Phase 1/2 clinical trial and…

My wife, Jill, has diagnosed me with attention deficit hyperactivity disorder (ADHD). (Look! A squirrel!) For the record, she is not a doctor, though she wishes she could play one on television. All joking aside, Jill has this uncanny ability to identify people’s issues. I remember the first time…

I’ve been a part of the Huntington’s disease (HD) community since my mom was diagnosed in 1995. I was 9 at the time. The gene mutation responsible for the disease had been discovered two years earlier, and community leaders were excited about the potential of the discovery to lead…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Galyan Bio plans to initiate a clinical trial of a small molecules candidate that aims to slow the progression of Huntington’s disease next year, working in with Bicoll GmbH. Galyan Bio is developing and optimizing small molecules as oral treatments of Huntington’s and other neurodegenerative disorders, which work by targeting disease-causing mutant…

In early May, cybercriminals known as DarkSide launched a devastating ransomware attack on Colonial Pipeline, one of the United States’ largest pipeline systems for refined oil products, which transports around 100 million gallons of fuel daily between Texas and New York. This attack reminded me of Huntington’s disease.

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

Metabolites seen as potential biomarkers of Huntington’s disease — called kynurenine pathway metabolites — showed little evidence of Huntington’s-specific activity in a recent study. While researchers could not entirely rule out kynurenine pathway metabolites as possible treatment targets, their results suggest that the disease is not well represented by the…