Updates

October 23, 2020October 21, 2020
Should I Get a Huntington’s Tattoo?

When I was a sophomore in college, I debated going blond. It was January, and every winter, I usually cut or dye my hair. ... Read more
October 22, 2020October 21, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its ... Read more
October 20, 2020October 20, 2020
FDA Puts Voyager’s Gene Therapy Candidate VY-HTT01 on Clinical Hold

The U.S. Food and Drug Administration (FDA) is putting on hold Voyager Therapeutics’ request to test VY-HTT01, its investigational gene therapy for Huntington’s disease, in a clinical trial. ... Read more
October 20, 2020October 15, 2020
It’s Not About You … It’s About Me

I have decided to get my wife a T-shirt that reads, “It’s not you, it’s me.” I want to get it for her so ... Read more
October 14, 2020October 12, 2020
Mental Preparedness Is Crucial Ahead of Genetic Testing

As I mentioned in my debut column of “Negative to Positives” a couple weeks ago, I have a genuine passion for helping those undergoing ... Read more

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May 23, 2016May 23, 2016

Blocking 2 Enzymes Seen to Reduce Nerve Cell Loss in Fruit Fly Model of Huntington’s

News

A collaboration between researchers at the University of Leicester, U.K., and the University of Maryland School of Medicine, Baltimore, may lead to a way of reversing some symptoms of neurogedenerative diseases, like Huntington’s, by blocking two specific enzymes of the kynurenine ... Read more

Updates

Should I Get a Huntington’s Tattoo?

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

FDA Puts Voyager’s Gene Therapy Candidate VY-HTT01 on Clinical Hold

It’s Not About You … It’s About Me

Mental Preparedness Is Crucial Ahead of Genetic Testing

Safety Board Recommends AMT-130 Trial Continue Enrolling, Treating Patients

The Protective Mindset of a Caregiver

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Show, Don’t Tell: The Little Details That Count in Caregiving

Top-line Data Show Potential Cognitive Benefit of Pepinemab in Early Huntington’s Patients

‘The Good Place’ Reminds Me of the Importance of a Moment

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Welcome to ‘Negative to Positives,’ A New Huntington’s Disease Column

Life Is Short, So Live It Well

Phase 3 Trial of Oral Pridopidine in Early Stage Patients Opening Soon

Learning to Expect the Unexpected

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

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

Writing Keeps This Caregiver Sane

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

Learn How to Party On, Dude

TBK1 Enzyme Seen to Clear Mutant Huntingtin Protein in Disease Models

An Ant Invasion Reminds Me How Important Having My Rock Is

As Caregivers, We Can Choose to Be Empathetic and Patient

Huntington’s Alters Brain Development Before Birth, Study Shows

Same But Different Photo Contest Celebrates People With Rare Diseases

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

Gut Microbiome Seen to Differ in People With Huntington’s or at Disease Risk

Telemedicine Makes Life Easier for Patients

Striving to Be as Carefree as a Kitten

Living Outside the Box

Antidopaminergic Meds Ease Chorea But May Worsen Cognition, Study Finds

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

New Streaming Channel Showcases Rare Disease Films

Blocking 2 Enzymes Seen to Reduce Nerve Cell Loss in Fruit Fly Model of Huntington’s