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Phase 3 Trial of Oral Pridopidine in Early Stage Patients Opening Soon
Prilenia Therapeutics, in partnership with the Huntington Study Group (HSG), has launched the Phase 3 ...
More from Huntington’s Disease News
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Learning to Expect the Unexpected
My wife, Jill, and I have not been to the local movie theater in months. ... -
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 ... -
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 ... -
Writing Keeps This Caregiver Sane
I stumbled into my future profession when I took a creative writing class as a ... -
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 ... -
Learn How to Party On, Dude
One of summer’s guilty pleasures is watching mindless movies. On a recent weekend, Jill and ... -
TBK1 Enzyme Seen to Clear Mutant Huntingtin Protein in Disease Models
An enzyme called TANK‐binding kinase 1 (TBK1) can lower levels of the mutant huntingtin protein ... -
An Ant Invasion Reminds Me How Important Having My Rock Is
About a week ago, my boyfriend and I treated ourselves to Qdoba for lunch. I ... -
As Caregivers, We Can Choose to Be Empathetic and Patient
My mom is dying. She’s 90, has dementia, can’t walk, yells angrily at times, and ... -
Huntington’s Alters Brain Development Before Birth, Study Shows
Huntington’s disease alters nerve cell development in the cortex — a brain region largely affected ... -
Same But Different Photo Contest Celebrates People With Rare Diseases
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
Gut Microbiome Seen to Differ in People With Huntington’s or at Disease Risk
Microbes in the gut of people with Huntington’s or likely to develop this disease appear to ... -
Telemedicine Makes Life Easier for Patients
Last year, I wrote about the possibility of telemedicine visits for Huntington’s patients with the ... -
Striving to Be as Carefree as a Kitten
I have been working from home since March and likely will continue to do so ... -
Living Outside the Box
If you could go anywhere on vacation, would you take your time planning the perfect ... -
Antidopaminergic Meds Ease Chorea But May Worsen Cognition, Study Finds
Antidopaminergic medications are associated with lesser chorea and irritability in people with Huntington’s disease, but they may worsen ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
Gene Transfer Method of EPO Improves Cognition in Mouse Study
Administration of the hormone erythropoietin (EPO) using a gene transfer method improved spatial cognition, stimulated ... -
The Enduring Positivity of Huntington’s Patients and Families
Ever since my wife, Jill, and our daughter were tested and diagnosed as gene positive ... -
I’ve Learned to Focus on Living in the Moment
I spent about two months weighing the pros and cons of getting bangs again. On ... -
Vico Therapeutics Raises $31M to Fund Advances in Central Nervous System Treatments
Vico Therapeutics has raised $31 million in Series A financing to continue pursuing the development ... -
Respecting Religious Beliefs Can Offer Peace in Families
What makes a great marriage? That age-old question has been the subject of many books ... -
Lessons Learned from Watching ‘Scooby-Doo’
Did you ever watch cartoons when you were young? One of my favorites as a ... -
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 ... -
Welcome to Empty-Nest World
If you think adulting is hard, wait until you are empty nesting. My wife, Jill, ... -
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 ... -
My Support Network Keeps Me Sane
During college, I always joked with my friends that I would drop out of school ... -
The Importance of Food, Glorious Food
The last few weeks have been somewhat trying for Jill. She has been plagued with ... -
Natural History Study of Huntington’s Starts Enrolling Participants
The first patients have been enrolled in a clinical study of the natural history of ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease ... -
AFFiRiS’ New Antibody May Help Halt HD Progression, Early Data Suggests
AFFiRiS’ C6-17, a candidate monoclonal antibody for the treatment of Huntington’s disease, is able to target and ... -
Being a Caregiver Means Being Involved
One of my recent columns was about the Huntington’s Disease Society of America’s annual convention. ... -
The Simple Joy of Taking a Walk
We live in Illinois, where the weather can be unpredictable. Some days we have perfect ... -
AMT-130, uniQure’s Gene Therapy, Given to First Patient Group in Trial
A Phase 1/2 clinical trial evaluating AMT-130 as a potential gene therapy for Huntington’s disease has “treated” its first ... -
It’s Not About You, Caregivers
I am messy. I’ve always been messy. My desk at work looks like an explosion ... -
German Researcher Promotes Non-drug Alternatives for Treating Huntington’s
At least three major pharmaceutical companies are looking into potential gene therapies for Huntington’s disease ... -
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those ... -
Cooking Reminds Me of Cherished Time with My Mother
My grandmother and my mom taught me how to cook. Growing up, I would make ... -
The Day I Summoned the Courage to Update My LinkedIn Profile
We were settling down in the living room to relax after putting our daughter to ... -
Overcoming Denial in the Face of Huntington’s Disease
The Huntington’s Disease Society of America held its annual conference in early June. Like many ... -
Austedo to Manage Chorea Safe at Higher Doses, Study Finds
Austedo (deutetrabenazine) can be safely taken at higher than the maximum dose now approved to ... -
To Join or Not to Join, That Is the Question
To this day, I have only talked to two younger people with Huntington’s who weren’t ... -
Coalition Will Address Racial Disparities in Rare Disease Communities
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on ... -
The Real World Is Precious
On May 21, 1992, MTV aired the first episode of “The Real World.” The introduction ... -
‘Hero’ Proteins Protect Other Proteins from Stress, Research Finds
A novel class of proteins, dubbed heat-resistant obscure (Hero) proteins, can protect other proteins from ... -
Pepinemab Clinical Trial Ongoing; Top-line Results Coming Later this Year
Vaccinex’s Phase 2 SIGNAL study, evaluating the investigational antibody pepinemab (VX15/2503) in Huntington’s disease patients ... -
A Caregiver’s Biggest Lesson
I have pink eye. Again. And I’m extremely happy I got it. I’ll get to ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
Feeling Helpless Vs. Being Helpful
If you’ve ever experienced an allergic reaction to something, you probably understand why the root ... -
China Approves Austedo for Huntington’s-related Chorea
Teva Pharmaceuticals’ Austedo (deutetrabenazine tablets) has been approved by China’s National Medical Products Administration (NMPA) for treating ... -
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe
European authorities must step up efforts to screen babies for a multitude of genetic disorders, ... -
Pulled Between Two Lives
Working remotely, while slightly draining, has had its benefits. Being able to sleep in until ... -
Music Transports Me Back to Those Dark Diagnosis Days
My husband and I were driving along a country road with no destination in mind. ... -
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting
Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual ... -
The Inexhaustible Reality of Love
Reality bites. That was the name of a 1994 romantic comedy movie starring Winona Ryder ... -
Government Agencies Approve MMJ’s Import of Marijuana for Research
Multiple government agencies have cooperated to allow MMJ International Holdings to import cannabis extracts to ... -
Honoring a Huntington’s Family Member Dedicated to Finding a Cure
May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, ... -
Huntington’s Disease Awareness Month Goes Virtual in May Due to Pandemic
Because of the COVID-19 pandemic, Huntington’s Disease Awareness Month organizers have come up with creative ways ... -
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand ... -
Practicing Self-care and Letting Go of the Guilt
All of my friends know about my love of wine. The first summer after I ... -
Hugging Is One of the Things I Miss the Most
The first time I met my wife, Jill, she told me she wasn’t comfortable with ... -
AskBio Acquires BrainVectis and Potential Gene Therapy for Huntington’s
AskBio announced that it has acquired BrainVectis, a company developing gene therapies for Huntington’s disease and other neurodegenerative conditions. The ... -
Enrollment Complete for GENERATION HD1 Trial Testing Tominersen for Huntington’s
Roche has completed patient enrollment for its Phase 3 GENERATION HD1 clinical trial evaluating the potential of ... -
Forced Family Time
My wife, Jill, and I live in Illinois, where the governor has declared a stay-at-home ... -
Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
While there are few silver linings to the cloud created by COVID-19, the pandemic that ... -
My Genetic Status Complicated Having a Baby
As I walked down the street to get my afternoon coffee one day, it appeared ... -
The Realities of Rare Diseases
Social distancing seems to be the trend these days. Several reality shows illustrate what I ... -
Vaccinex’s Pepinemab Halts Brain Shrinkage, Eases Symptoms in Early Huntington’s Patients, Results Shows
Vaccinex’s experimental therapy pepinemab (VX15/2503) improves brain metabolism, halts its atrophy, and eases motor and ... -
New Perspectives from a Trip to the ER
This past Monday night, my boyfriend and I cooked an amazing meatball dish with garlic ... -
Small Molecule Seen to Reverse Huntington’s Repeat CAG Mutation
A DNA-binding compound can reverse the repeat expansion mutation that is associated with Huntington’s disease, ... -
We Are Two People with One Heart
My home has been super quiet for the past several days, a silence that will ... -
Believing in the Impossible
When she was little, my daughter, Alexus, visited a 7-Eleven store with my wife, Jill. ... -
Factor-H Reaches Out to Huntington’s Neglected Families of South America
Huntington’s disease affects an average of 1 in 10,000 people worldwide. But in small, remote ... -
NORD’s Advice on COVID-19: You’re Stronger Than You Think
First, the bad news: If you’re one of the 30 million or so Americans with ... -
A 10-minute Walk, and a Purr That Changed My Life
Thursday, Oct. 17, 2019, started off like most weekdays for me. Working in consulting, there ... -
The Importance of Having ‘Emotional Vitamins’
I can’t stand dogs. They bark a lot. They smell. They require a lot of ... -
AMT-130 Gene Therapy Trial Postpones Treatments Amid COVID-19 Pandemic
Treatment in a U.S.-based Phase 1/2 clinical trial evaluating uniQure‘s gene therapy AMT-130 in people ... -
Pain Management Often Neglected in Huntington’s, Researchers Say
The uncontrolled jerking and writhing movements associated with Huntington’s disease are well known, along with ... -
Saying ‘Yes, Yes!’ to the Power of Words
I wasn’t expecting to be brought to tears when I heard motivational speaker Lisa Nichols ... -
Celebrating a Year of Being Part of a Courageous Community
This week marks a year since I started writing my column, “A Family Tradition.” Having ... -
‘Our Odyssey’ Nonprofit Connects Young Adults Who Have Rare Diseases
As a high-school student in the suburbs of Boston, Seth Rotberg watched his mother’s mental ... -
Coronavirus Has Affected Everyone’s Lives
For many people I know, including me, COVID-19 started out as a joke. It shares ...