Paying Attention to My Wife’s Silent Suffering

The events of the past week have reminded me just how tough my wife, Jill, is. I’m grateful for her grit because I know she will need it as the conditions of her Huntington’s disease worsen as the years go by. Jill is the type of person who…

The first U.S. patients have been enrolled in PROOF-HD, a Phase 3 clinical trial investigating pridopidine as a treatment for Huntington’s disease, according to developers Prilenia Therapeutics. PROOF-HD (NCT04556656) will enroll up to 480 people with early-stage Huntington’s, and is currently recruiting at more than 60…

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…

When my sister died in a tragic accident a year ago, grief caused me to lose my appetite. As a result, over the next two months, I lost around 13 pounds. I found myself being content with one full meal a day. Losing weight like that usually isn’t…

The Hereditary Disease Foundation‘s (HDF) has announced the first winner of its Nancy S. Wexler Young Investigator Prize, supporting excellence and creative thinking in Huntington’s disease research. The inaugural award went to Osama Al-Dalahmah, a neuropathology instructor in the department of pathology and cell biology…

I’ve always tried to stay alert to the needs of the Huntington’s disease community by listening during support groups, learning at conferences and conventions, and following along with the many Huntington’s conversations on social media platforms. One topic that consistently comes up in conversations is genetic testing. Everyone has their…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

When I write this column every week, I try to only share the things that can, and will, affect my family’s battle with Huntington’s disease. Today, I would like to write about something that affects people with every disease and the families who care for them: voting.

The U.S. Food and Drug Administration (FDA) has given orphan drug designation to the oral therapy branaplam (LMI070) as a potential treatment for Huntington’s disease, the therapy’s developer, Novartis, announced. The designation is given to medications that have the potential to treat rare diseases — defined in…

When I was a sophomore in college, I debated going blond. It was January, and every winter, I usually cut or dye my hair. I always need a change of pace during winter. Normally, I go with red or black, and my mom can easily dye my hair.