Updates

September 22, 2020September 17, 2020
Learning to Expect the Unexpected

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 ... Read more
September 22, 2020September 22, 2020
New book, ‘Harry Needs a Hug,’ Helps Children Who Have Huntington’s in Their Family

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 ... Read more
September 18, 2020September 16, 2020
Finding a Therapist to Talk to About Huntington’s Can Be Hard

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 ... Read more
September 15, 2020September 15, 2020
Writing Keeps This Caregiver Sane

I stumbled into my future profession when I took a creative writing class as a junior in high school. I took the class because ... Read more
September 15, 2020September 15, 2020
Huntington’s in Youth Closely Tied to Problems With School and Social Life

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 ... 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

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

Subscribe to our mailing list

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

Gene Transfer Method of EPO Improves Cognition in Mouse Study

The Enduring Positivity of Huntington’s Patients and Families

I’ve Learned to Focus on Living in the Moment

Vico Therapeutics Raises $31M to Fund Advances in Central Nervous System Treatments

Respecting Religious Beliefs Can Offer Peace in Families

Lessons Learned from Watching ‘Scooby-Doo’

Study Finds Evidence of Brain Damage in Huntington’s Decades Before Clinical Onset

Welcome to Empty-Nest World

Adequate Care Lacking for Many With Huntington’s in India, Study Finds

My Support Network Keeps Me Sane

The Importance of Food, Glorious Food

Natural History Study of Huntington’s Starts Enrolling Participants

Being a Caregiver Means Being Involved

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

Pin It on Pinterest

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

Subscribe to our mailing list

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

Gene Transfer Method of EPO Improves Cognition in Mouse Study

The Enduring Positivity of Huntington’s Patients and Families

I’ve Learned to Focus on Living in the Moment

Vico Therapeutics Raises $31M to Fund Advances in Central Nervous System Treatments

Respecting Religious Beliefs Can Offer Peace in Families

Lessons Learned from Watching ‘Scooby-Doo’

Study Finds Evidence of Brain Damage in Huntington’s Decades Before Clinical Onset

Welcome to Empty-Nest World

Adequate Care Lacking for Many With Huntington’s in India, Study Finds

My Support Network Keeps Me Sane

The Importance of Food, Glorious Food

Natural History Study of Huntington’s Starts Enrolling Participants

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Being a Caregiver Means Being Involved

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

Pin It on Pinterest