Updates

July 28, 2020July 23, 2020
Lessons Learned from Watching ‘Scooby-Doo’

Did you ever watch cartoons when you were young? One of my favorites as a child was “Scooby-Doo,” an animated cartoon series that featured ... Read more
July 28, 2020July 28, 2020
Study Finds Evidence of Brain Damage in Huntington’s Decades Before Clinical Onset

People who will develop Huntington’s disease have subtle biological evidence of brain damage decades before the onset of symptoms, a new study indicates. This ... Read more
July 21, 2020July 20, 2020
Welcome to Empty-Nest World

If you think adulting is hard, wait until you are empty nesting. My wife, Jill, and I have a daughter who lives in the ... Read more
July 21, 2020July 21, 2020
Adequate Care Lacking for Many With Huntington’s in India, Study Finds

Among people with Huntington’s disease living in India, psychiatric problems are common but routine clinical follow-up is lacking, a study suggests, emphasizing the need ... Read more
July 17, 2020July 15, 2020
My Support Network Keeps Me Sane

During college, I always joked with my friends that I would drop out of school to open a bar in Canada (I prefer their ... 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

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

AFFiRiS’ New Antibody May Help Halt HD Progression, Early Data Suggests

The Simple Joy of Taking a Walk

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AMT-130, uniQure’s Gene Therapy, Given to First Patient Group in Trial

It’s Not About You, Caregivers

German Researcher Promotes Non-drug Alternatives for Treating Huntington’s

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Cooking Reminds Me of Cherished Time with My Mother

Overcoming Denial in the Face of Huntington’s Disease

Austedo to Manage Chorea Safe at Higher Doses, Study Finds

To Join or Not to Join, That Is the Question

Coalition Will Address Racial Disparities in Rare Disease Communities

The Real World Is Precious

‘Hero’ Proteins Protect Other Proteins from Stress, Research Finds

Pepinemab Clinical Trial Ongoing; Top-line Results Coming Later this Year

A Caregiver’s Biggest Lesson

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Feeling Helpless Vs. Being Helpful

China Approves Austedo for Huntington’s-related Chorea

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Pulled Between Two Lives

Music Transports Me Back to Those Dark Diagnosis Days

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

The Inexhaustible Reality of Love

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

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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

AFFiRiS’ New Antibody May Help Halt HD Progression, Early Data Suggests

The Simple Joy of Taking a Walk

Subscribe to our mailing list

AMT-130, uniQure’s Gene Therapy, Given to First Patient Group in Trial

It’s Not About You, Caregivers

German Researcher Promotes Non-drug Alternatives for Treating Huntington’s

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Cooking Reminds Me of Cherished Time with My Mother

The Day I Summoned the Courage to Update My LinkedIn Profile

Overcoming Denial in the Face of Huntington’s Disease

Austedo to Manage Chorea Safe at Higher Doses, Study Finds

To Join or Not to Join, That Is the Question

Coalition Will Address Racial Disparities in Rare Disease Communities

The Real World Is Precious

‘Hero’ Proteins Protect Other Proteins from Stress, Research Finds

Pepinemab Clinical Trial Ongoing; Top-line Results Coming Later this Year

A Caregiver’s Biggest Lesson

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Feeling Helpless Vs. Being Helpful

China Approves Austedo for Huntington’s-related Chorea

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Pulled Between Two Lives

Music Transports Me Back to Those Dark Diagnosis Days

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

The Inexhaustible Reality of Love

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

Pin It on Pinterest