September 22, 2020September 17, 2020

Learning to Expect the Unexpected

A Family Tradition - a Column by Carlos Briceño, Columns

My wife, Jill, and I have not been to the local movie theater in months. It’s been so long that we can’t remember the last movie we saw there. ... Read more

September 22, 2020September 22, 2020

New book, ‘Harry Needs a Hug,’ Helps Children Who Have Huntington’s in Their Family

News

A new book is available to help children cope when a family member has Huntington’s disease. Called “Harry needs a hug: A story for children learning to deal with ... Read more

September 18, 2020September 16, 2020

Finding a Therapist to Talk to About Huntington’s Can Be Hard

Always Looking Forward – a Column by Alexus Jones, Columns

This week, I have my first therapy appointment in a while. I hope therapy will give me a structured place to talk about Huntington’s with someone not impacted by ... Read more

September 15, 2020September 15, 2020

Writing Keeps This Caregiver Sane

A Family Tradition - a Column by Carlos Briceño, Columns

I stumbled into my future profession when I took a creative writing class as a junior in high school. I took the class because it was an elective, something ... Read more

September 15, 2020September 15, 2020

Huntington’s in Youth Closely Tied to Problems With School and Social Life

News

Behavioral changes due to early onset Huntington’s disease and problems with school, and social and family life are common,  particularly among pediatric patients, according to a case series study in ... Read more

September 8, 2020September 2, 2020

Learn How to Party On, Dude

A Family Tradition - a Column by Carlos Briceño, Columns

One of summer’s guilty pleasures is watching mindless movies. On a recent weekend, Jill and I watched “Bill and Ted Face the Music,” which is so egregiously and heinously ... Read more

September 8, 2020September 8, 2020

TBK1 Enzyme Seen to Clear Mutant Huntingtin Protein in Disease Models

News

An enzyme called TANK‐binding kinase 1 (TBK1) can lower levels of the mutant huntingtin protein — which underlies the development of Huntington’s disease — and prevent its aggregation in cellular ... Read more

September 4, 2020September 2, 2020

An Ant Invasion Reminds Me How Important Having My Rock Is

Always Looking Forward – a Column by Alexus Jones, Columns

About a week ago, my boyfriend and I treated ourselves to Qdoba for lunch. I am in love with their food, as most people in my life know, especially ... Read more

September 1, 2020August 27, 2020

As Caregivers, We Can Choose to Be Empathetic and Patient

A Family Tradition - a Column by Carlos Briceño, Columns

My mom is dying. She’s 90, has dementia, can’t walk, yells angrily at times, and lives in an assisted living home, where visitors are frowned upon because of the ... Read more

September 1, 2020September 1, 2020

Huntington’s Alters Brain Development Before Birth, Study Shows

News

Huntington’s disease alters nerve cell development in the cortex — a brain region largely affected in people with the condition — before birth, a study has found. “Huntington’s definitely ... Read more

August 31, 2020September 1, 2020

Same But Different Photo Contest Celebrates People With Rare Diseases

News, syndicated

Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme ... Read more

August 25, 2020September 1, 2020

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

News

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient ... Read more