March 19, 2021March 17, 2021

I Keep Moving by Storing Little Boxes in My Head

Always Looking Forward – a Column by Alexus Jones, Columns

I like to keep things organized. Everything should have a place, even if it’s on the floor next to my bed, like my clothes. Even my problems have a place: ... Read more

March 16, 2021March 11, 2021

A Former Huntington’s Caregiver Shares Her Best Caregiving Tips

A Family Tradition - a Column by Carlos Briceño, Columns

I like learning, especially from smart people. My wife, Jill, is one of the smartest I know. With that in mind, I wanted her wisdom from the years she spent ... Read more

March 16, 2021March 16, 2021

Women with Huntington’s Experience Worse Symptoms Than Men, Global Study Suggests

News

Women with Huntington’s disease have worse motor, cognitive, and depressive symptoms than men with the condition, according to data from the global Enroll-HD observational study. Notably, no sex-specific differences were ... Read more

March 9, 2021March 3, 2021

An Important Lesson I Learned From Waiting at the Doctor’s Office

A Family Tradition - a Column by Carlos Briceño, Columns

I have previously discussed in this space my wife Jill’s dislike of visiting the doctor. I use the word “dislike,” but she would use the word “hate.” Since Jill was ... Read more

March 9, 2021March 9, 2021

Project Seeks Contributors to Depict Life With Huntington’s

News

An alliance of Huntington’s disease (HD) organizations in the U.K. is calling for patient contributions to a project that intends to show the world what it’s like to live with ... Read more

March 8, 2021March 8, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

News, syndicated

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 2, 2021February 25, 2021

We All Deserve Quality Care: A Deep Dive Into ‘The Soul of Care’

A Family Tradition - a Column by Carlos Briceño, Columns

I love to read. I developed my affinity for books as a young child, when I would accompany my father on his trips to the library. A joke in my ... Read more

March 2, 2021March 2, 2021

Wearable Devices May Aid Diagnosis, But Need Improvement

News

Wearable devices show considerable promise in helping diagnose people with Huntington’s disease, but the studies evaluating them need to be standardized to maximize their potential benefit to patients, a review ... Read more

February 25, 2021February 25, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

News, syndicated

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 24, 2021February 22, 2021

Here’s How You Can Get Involved in Non-clinical Huntington’s Research

Columns, Negative to Positives – a Column by B.J. Viau

In a previous column, I talked about the many questions one might have when signing up for a clinical trial. Lots of questions, concerns, risks, hope, and opportunity come with ... Read more

February 23, 2021February 23, 2021

HDSA Expands Centers of Excellence Program to 54 Sites

News

With some recent additions, the Huntington’s Disease Society of America (HDSA) has expanded its Centers of Excellence program — ensuring comprehensive care provided by multidisciplinary care teams — to 54 ... Read more

February 23, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

News, syndicated

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more