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Losing My Sense of Taste Taught Me a Lesson in Caregiving
Last November, I joined a club. I share this news with the same spirit that ...
More from Huntington’s Disease News
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Study Links Cognitive Impairment to Reduced Gray Matter Volume
Based on MRI scans, Huntington’s disease patients with major cognitive impairments have reduced gray matter ... -
UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care
U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating ... -
No Matter Your Hardships, Today Is a Great Day to Be Alive
I’ve lost two moms in my lifetime. My biological mom, Debbie, who was with me ... -
Huntexil Analysis Shows Slowed Decline in Total Functional Capacity
Treatment with Huntexil (pridopidine) can slow the decline in total functional capacity in people with ... -
As Caregivers, We Can Choose a Positive Mindset
It’s all about the mindset. I suggest caregivers work on developing a positive mindset. It ... -
Focusing on What Is Good and Beautiful This Year
Hi, 2021. How are you? You have much to live up to. Last year, a ... -
‘Dancing at the Vatican’ Spotlights Families’ Struggles, Joy at Meeting Pope
The Huntington’s Disease Association of Ireland (HDAI) is spreading the word about a new documentary ... -
Operation Warp Speed Should Inspire a Similar Effort for Rare Diseases
Whoever named Operation Warp Speed, the U.S. government’s project to produce and develop COVID-19 vaccines ... -
Natural History Study of Huntington’s Fully Enrolled, Triplet Says
Triplet Therapeutics announced it has completed patient enrollment in SHIELD HD, a natural history study ... -
Getting Involved in the Huntington’s Community Brings Great Rewards
I have only known one way to live in a family affected by a rare ... -
Single CDNF Protein Injection Shown to Protect Nerve Cells, Improve Motor Skills in Rats
A single injection of the protein CDNF — cerebral dopamine neurotrophic factor — into the brains ... -
The Turn-Negatives-Into-Positives Challenge
Thick rubber bands seem unbreakable. It takes effort to pull each end. In contrast, breaking ... -
Time Is the Best Gift to Share With Others
So … December is finally here. It’s the last month of the longest year ever, ... -
1st Patient Dosed in Phase 2a Trial of Annexon’s Antibody Therapy for Huntington’s
The first participant was dosed in a Phase 2a clinical trial testing Annexon’s investigational therapy ANX005 ... -
Love Is the Mission
I usually write about what life is like as a caregiver, along with my observations ... -
Late-onset Huntington’s Has Fewer Motor Defects, Similar Cognitive Progression, Study Shows
Patients with early-onset Huntington’s disease (HD) experience more muscle and eye movement abnormalities, and more ... -
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and ... -
Would You Want to Know If You Have Huntington’s?
Editor’s note: This column briefly mentions the topic of suicide. Please find resources for help ... -
I’m Determined to Focus on Gratitude
Two years ago, my wife, Jill, took a genetic test and discovered she has Huntington’s ... -
Phase 1 Trial Will Test Oral PTC518 Candidate Therapy; First Results Due Early 2021
A Phase 1 trial will evaluate PTC Therapeutic’s PTC518, its investigational therapy for Huntington’s disease, ... -
The Value of Consulting a Genetic Counselor During Testing
As I briefly touched on in my previous column, “Opportunities for a Better Genetic Testing ... -
The Definition of a Caregiver
At some point in the history of mankind, someone said, “Let’s raise awareness about [topic ... -
PDYN-derived Peptides Identified as Possible, Much-needed HD Biomarkers
Levels of proteins derived from prodynorphin (PDYN) — ultimately used during cell-to-cell signaling in the ... -
Paying Attention to My Wife’s Silent Suffering
The events of the past week have reminded me just how tough my wife, Jill, ... -
First Patients Enrolled in PROOF-HD Phase 3 Trial Testing Pridopidine
The first U.S. patients have been enrolled in PROOF-HD, a Phase 3 clinical trial investigating ... -
Fasting as a Means of Solidarity
When my sister died in a tragic accident a year ago, grief caused me to ... -
1st Wexler Prize Given Scientist Studying Astrocytes Role in Huntington’s
The Hereditary Disease Foundation‘s (HDF) has announced the first winner of its Nancy S. Wexler Young Investigator ... -
Opportunities for a Better Genetic Testing Process
I’ve always tried to stay alert to the needs of the Huntington’s disease community by ... -
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ... -
Making a Difference in the Upcoming Elections
When I write this column every week, I try to only share the things that ... -
Branaplam Receives Orphan Drug Designation for Huntington’s; Trial Planned for 2021
The U.S. Food and Drug Administration (FDA) has given orphan drug designation to the oral ... -
Should I Get a Huntington’s Tattoo?
When I was a sophomore in college, I debated going blond. It was January, and ... -
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 ... -
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 ... -
Mental Preparedness Is Crucial Ahead of Genetic Testing
As I mentioned in my debut column of “Negative to Positives” a couple weeks ago, ... -
Safety Board Recommends AMT-130 Trial Continue Enrolling, Treating Patients
No significant safety concerns associated with AMT-130, uniQure’s experimental gene therapy for Huntington’s disease, were identified ... -
The Protective Mindset of a Caregiver
I’m protective, a trait typical of most men. For example, I will drive for 18 ... -
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting ... -
Show, Don’t Tell: The Little Details That Count in Caregiving
When I first understood that I was going to be a writer, I did what ... -
Top-line Data Show Potential Cognitive Benefit of Pepinemab in Early Huntington’s Patients
Vaccinex’s investigational antibody pepinemab showed good tolerability in a Phase 2 clinical trial of people ... -
‘The Good Place’ Reminds Me of the Importance of a Moment
On Saturday, the last season of the Netflix series “The Good Place” began streaming. To ... -
Welcome to ‘Negative to Positives,’ A New Huntington’s Disease Column
Like many of you reading, I am from a Huntington’s disease (HD) family. I learned ... -
Life Is Short, So Live It Well
The anniversary of my sister’s death is coming up in about a month. Rose died ... -
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 ... -
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 ... -
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 ... -
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 ... -
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. ... -
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 ... -
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 ...