At Risk for Huntington's Disease

My name is Gene Veritas, which is a pseudonym I use to write about Huntington's disease on this weblog. I tested positive for HD in 1999, and my mother died of the disease in 2006. My passion in life is to stop HD and other neurological diseases from devastating individuals and their families. Your comments are welcome. You can post them at the end of the blog entries, or you can e-mail me by clicking here.


The incredible lightness – and responsibility – of exiting the HD closet
Saturday, December 8, 2012
Lots of people are in my corner.
Comments (1) | Tags: HD closet, advocacy, advocate, Huntington's, wife, daughter, mother, symptoms, neurological, health, University of San Diego, testing, tested positive, Parkinson's, Lewy body disease, at-risk, awareness, leader, hope, Brazil, Isis, genetic, stigma, research, brain, gene-positive

The wholehearted embrace: my first HDSA convention
Monday, June 11, 2012
Our organization's meaning: Hope, Determination, Solidarity, Awareness.
Comments (0) | Tags: Huntington's, Brazil, Person of the Year, symptoms, mother, daughter, sister, HD closet, suicide, onset, gene-positive, Guthrie, Social Security, juvenile HD, Louise Vetter, HD Parity Act, mutation, genetic, tested positive, discrimination, awareness, advocacy, solidarity, neurodegenerative

Yale's partnership against HD: an alum reconnects
Monday, June 4, 2012
Scientists pursue 'Viagra for brain' and other solutions.
Comments (2) | Tags: Huntington's, Yale, Martha Nance, LaVonne Goodman, positive genetic test, activist, coming out, stigma, discrimination, closet, CHDI, treatments, cure, daughter, mother, symptoms, leadership, activism, scientist, brain, drug, creatine, coming out, supplements, HDDW, Huntington's Disease Drug Works, clinical trial, cognition, memory, psychiatric, BDNF, drug hunter, Pfizer, Alzheimer's, PDE inhibitor, gene-positive, symptomatic, depression, genetic testing, genetic, cocktail, gene, Parkinson's, orphan

From a paralyzed genius, lessons of determination and caregiving for the HD community
Saturday, April 14, 2012
Stephen Hawking still strong at 70.
Comments (0) | Tags: Lou Gehrig's, ALS, wife, mother, Huntington's, symptoms, gene-positive, caregiver, disabled, care, genetic, depression, science, sex, stigma, denial, nursing home, advocacy, wheelchair, onset, daughter, brain, memory, Social Security, Medicaid

The Team Hope Walk: reinforcing the first line of defense against HD
Monday, April 2, 2012
Event can help inform and galvanize the community.
Comments (4) | Tags: hope, wife, daughter, gene-positive, caregiver, father, mother, grandparent, HD closet, fear, stigma, denial, tested negative, therapies, Louise Vetter, Vertex, Lundbeck, awareness, research, asymptomatic, gene-negative, clinical trial, treatment

The first dose is hope: moving towards treatments for HD
Thursday, March 8, 2012
Spreading the message about progress is crucial.
Comments (3) | Tags: genetic, Huntington's, hope, mother, symptoms, gene-positive, testing positive, treatments, cure, CHDI, clinical trials, symptomatic, Alnylam, Isis, Medtronic, Pfizer, Novartis, Vertex, Robert Pacifici, Jim Gusella, genetic test, gene, huntingtin, oligonucleotide, Michael Hayden, brain, onset, gene silencing, Yale, stem cell, chorea, cognitive, mood, research, premanifest, scientist, advocate, neuron

The quandary of denial in the HD community (Part I)
Thursday, February 9, 2012
How do we convince relatives to join the cause?
Comments (3) | Tags: denial, stigma, clinical trial, treatments, cure, mother, father, daughter, wife, sister, HD closet, genetic, discrimination, gene-positive, symptoms, blog, CHDI, activism, activist, HDSA Person of the Year, testing, tested positive, tested negative, supplements, California, nursing home, observational study, advocate, advocacy, Huntington's

To strive or to chill? Seeking balance in the fight against HD
Sunday, January 29, 2012
That's my daily challenge as an advocate.
Comments (3) | Tags: Huntington's, advocate, treatments, cure, testing positive, gene, neurological, sypmtoms, mother, wife, daughter, activism, father, blog, advocacy, suicide, abortion, death, juvenile HD, Yale, activist, onset, researcher, caregiver, gene-positive

Seven years of striving for a realistic and unapologetic view of HD
Sunday, January 8, 2012
It's time to stop feeling timid!
Comments (0) | Tags: blog, Huntington's, mortality, genetic, discrimination, mother, death, HD warrior, father, daughter, wife, genetic test, onset, symptoms, activist, science, Alnylam, research, stigma, treatments, cure, HD closet, CHDI, Catholic, spiritual, faith, brain, gene-positive, anxiety, clinical trial, HDSA Person of the Year, advocacy, suicide, abortion, genetic testing, pregnancy, testing, test, Huntington's Disease Drug Works, LaVonne Goodman, denial, neurological, asymptomatic, caregiver

Striving for brave new brains
Monday, January 2, 2012
Alnylam presents a highly positive report.
Comments (0) | Tags: Huntington's, mother, onset, gene-positive, science, researcher, brain, Alzheimer's, Parkinson's, Lou Gehrig's, stroke, genetic, drug, memory, depression, anxiety, gene, neurogenesis, meditation, consciousness, genetic testing, discrimination, neuroscience, dementia, cure, treatment, gene silencing, Alnylam, Isis, FDA, siRNA, ALN-HTT, huntingtin, stigma, HD closet, neurological, Enroll-HD, symptoms

Kate's untested baby (HD and abortion – Part II)
Sunday, December 18, 2011
A young woman prepares for the worst and prays for the best.
Comments (0) | Tags: Huntington's, abortion, juvenile Huntington's, juvenile HD, gene-positive, son, daughter, mother, father, blog, love, wife, tested positive, tested negative, HD-free, suicide, mercy killing, assisted suicide, nursing home, symptoms, untested, at-risk, testing, genetic testing, geneticist, negative, gene, chorea, test, CAG repeats, grandfather, huntingtin, memory, caregiving, wheelchair, Medicare, Medicaid, disabled, sterilize, sterilization, technology, awareness, cure, treatments, Catholic, stress, struggle

An angel fighting for the cure (HD and abortion – Part I)
Sunday, December 11, 2011
Timothy's brain was donated for research.
Comments (4) | Tags: Huntington's, brain, gene, abortion, mother, research, husband, wife, daughter, son, tested positive, gene-positive, activist, tested negative, pregnancy, juvenile Huntington's, symptoms, love, PGD, CAG repeats, geneticist, onset, protein, DNA, cure, treatments, Alzheimer's, Parkinson's, science, scientist, HD closet, closet, genetic, solidarity

The Holy Grail of HD research: the gene-positive, drug trials, and treatments
Wednesday, November 30, 2011
Scientists aren't ready to include me.
Comments (0) | Tags: genetic test, Huntington's, onset, brain, clinical trial, treatment, caregiver, asymptomatic, pre-manifest, gene-positive, symptomatic, tested negative, mother, symptoms, cure, gene, coenzyme Q-10, Enroll-HD, PREDICT-HD, COHORT, CHDI, Huntington's Disease Drug Works, dementia, Isis, Alnylam, genetic, Alzheimer's, Robi Blumenstein, at risk, FDA, research, researcher, scientist

An HD Thanksgiving toast
Monday, November 21, 2011
It's a time of family and feasts – and gratitude.
Comments (0) | Tags: Huntington's, mother, father, daughter, wife, warrior, diagnosis, testing positive, symptoms, tested negative, caregiver, scientist, pharmaceutical, gene-positive, treatments, cure

Finding America's passion: the NFL and HD
Monday, November 14, 2011
I fervently hope the league will join the cause.
Comments (0) | Tags: Huntington's, brain, National Football League, symptoms, research, treatments, cure, Alzheimer's, Lou Gehrig's, Parkinson's, stroke, Edgemoor, wheelchair, tested positive, HD-positive, tested negative, gene-positive, mother, daughter, son, at risk, stem cell, Katie Moser, Lundbeck, genetic, mutation, chorea, Xenazine, tetrabenazine, Parity Act, Terry Leach, Chargers, dementia, memory, Guthrie, cerebral, exercise, caregiving

HD in the media – Part II: A suicide on TV
Monday, November 7, 2011
Watching Private Practice left me feeling painfully mortal.
Comments (1) | Tags: Huntington's, suicide, assisted suicide, symptoms, doctor, at-risk, gene-positive, genetic, genetic testing, mother, son, father, daughter, wife, genetic test, disabled, testing positive, HD-negative, nursing home, onset, CHDI, diagnosis, CAG repeats, chorea, support group, research, treatment, cure, denial

HD and the media – Part I: stigma and genetic testing
Monday, October 31, 2011
Testing is no longer just a personal matter.
Comments (3) | Tags: Huntington's, Katie Moser, at risk, at-risk, mother, daughter, gene, stigma, denial, HDSA Person of the Year, PGD, advocate, Center of Excellence, genetic testing, genetic, genetic counseling, gene-positive, HD-positive, get tested, geneticist, wife, tested negative, support group, clinical trials, treatment, cure, Martha Nance, brain, neurological

BDNF and ‘Neurobics’: building a ‘beautiful mind’ against HD
Monday, October 10, 2011
I'm cross-training my brain.
Comments (1) | Tags: onset, Huntington's, gene, mother, brain, A Beautiful Mind, symptoms, medication, genetic, gene-positive, HD-positive, mother, BDNF, striatum, exercise, Neurobic, symptomatic, CHDI, psychiatric, depression, synapse, Jan Nolta, Jody Corey-Bloom, stem cell, Fastlane, diet

Waiting for symptoms: How long can I hang on?
Wednesday, September 21, 2011
I'm in the gray zone between my genetic test and HD onset.
Comments (1) | Tags: Huntington's, symptoms, gene-positive, onset, mother, genetic test, gene, psychiatric, chorea, scientist, research, premanifest, brain, psychotherapist, depression, anxiety, Huntington's Disease Drug Works, creatine, coenzyme Q-10, trehalose, omega-3, blueberry, wife, daughter, spirituality, modifier gene, father, treatment, cure

One Man's Story: Entering the Light
Friday, September 2, 2011
Your personal testimony is the best way to fight HD's stigma.
Comments (0) | Tags: stigma, brain, fatal, Huntington's, mother, diagnosis, tested, gene-positive, discrimination, at-risk, testing, closet, tested positive, genetic, geneticist, pre-existing condition, treatment, cure, clinical trial, researcher, advocate, genetic testing, trial, awareness

Do-or-die time for Huntington's clinical trials
Wednesday, August 24, 2011
The stakes are enormous: treatments – or another generation lost to HD.
Comments (0) | Tags: Huntington's, gene-positive, clinical trial, trial, caregiver, Center of Excellence, research, treatment, cure, scientist, at risk, Alzheimer's, Parkinson's, wheelchair, mother, sister, Lundbeck, tetrabenazine, Xenazine, observational study, LaVonne Goodman, Keith Elliston, Jan Nolta, Huntington's Disease Drug Works, symptoms, symptomatic, stigma, denial, closet, testing, tested, genetic testing, Enroll-HD, chorea, shaking, FDA, CHDI, awareness, stem cell, mesenchymal stem cell, brain, neuron

No time for complacency: get ready for HD clinical trials
Thursday, July 28, 2011
We must all chip in to help find treatments.
Comments (0) | Tags: Huntington's, scientist, gene, Charles Sabine, clinical trial, gene-positive, symptoms, symptomatic, at-risk, CHDI, trial, untested, denial, sister, daughter, activism, activist, love, researcher, FDA, drug, motor, cognitive, psychiatric, brain, cocktail, Xenazine, tetrabenazine, Lundbeck, Alnylam, RNA interference, asymptomatic, presymptomatic, mother, Enroll-HD

Some reflections on being named 'HDSA Person of the Year'
Saturday, July 9, 2011
The honor is for the battle we all fight.
Comments (4) | Tags: Huntington's, HDSA Person of the Year, Louise Vetter, stem-cell, gene-positive, biotech, caregiver, Katie Moser, stigma, neurological, awareness, clinical trial, advocacy, cure, symptomatic

Face to face at the Huntington's convention
Tuesday, June 21, 2011
It's time to brainstorm on improving our cause.
Comments (1) | Tags: Huntington's, mother, wife, daughter, gene-positive, research, Brazil, scientist, cure, treatment, Alnylam, symptoms, onset, caregiving, solidarity

The Huntington's disease high-wire act
Wednesday, June 8, 2011
A very fine line exists between passion and obsession.
Comments (1) | Tags: survival, incurable, Huntington's, mother, genetic mirror, death, treatment, cure, gene-positive, supplements, Huntington's Disease Drug Works, advocate, activism, genetic, caregiver, nursing home, pregnancy, Alnylam, HD closet, wife, daughter, symptoms

Holding the potential cure in my hand
Wednesday, May 25, 2011
Alnylam plans to apply for a clinical trial in 2012.
Comments (1) | Tags: Huntington's, Alnylam, ALN-HTT, cure, treatment, mother, brain, genetic, symptoms, CHDI, Medtronic, clinical trial, huntingtin, siRNA, RNAi, gene silencing, Genome Project, gene-positive, biotech, Parkinson's, Dinah Sah, Isis, cocktail, cognitive, Phase I, Phase II, Phase III, Teilhard, daughter, Louise Vetter, pump, FDA

The Huntington's community rising and converging
Wednesday, May 11, 2011
It's time to conquer HD!
Comments (0) | Tags: Huntington's, Hereditary Disease Foundation, Huntington's Disease Drug Works, CHDI, cure, symptoms, mother, daughter, wife, father, solidarity, diagnosis, gene-positive, HD Buzz, HDDW, LaVonne Goodman, genetic, brain, stem cell, Jan Nolta, California, Alzheimer's, Parkinson's, Lou Gehrig's, mesenchymal stem cell, neuron, RNA, Isis, Alnylam, Institute for Regenerative Cures, Lundbeck, Xenazine, tetrabenazine, FDA, chorea, PGD, at-risk, tested negative, psychiatric, behavioral, depression, psychotic, caregiver, caregiving, medication, cope, huntingtin, gene, protein, huntingtin suppression, advocacy, activism

Bin Laden and HD
Monday, May 2, 2011
In the next ten years, we can defeat HD.
Comments (5) | Tags: 9/11, wife, daughter, Huntington's, Obama, treatment, cure, gene, research, tested negative, tested positive, mother, symptoms, National Institutes of Health, awareness, CHDI, CHDI Foundation, drug, Jan Nolta, gene-positive, activist, Alnylam, clinical trial

The diary of a Huntington's disease activist
Monday, April 25, 2011
There's no secret ingredient or spectacular formula for success.
Comments (3) | Tags: activist, activism, Huntington's, advocacy, advocate, awareness, wife, daughter, support group, symptoms, Parity Act, Edgemoor, cure, care, caregiving, brain, mother, Alzheimer's, Parkinson's, psychiatric, tested positive, genetic, disability, Huntington's Disease Drug Works, supplement, coenzyme Q-10, trehalose, Omega-3, genetic mirror, gene-positive

The faceless faces of Huntington's disease
Saturday, April 2, 2011
It's time to remove our masks.
Comments (722) | Tags: Huntington's, orphan disease, genetic defect, genetic, brain, death, stigma, ignorance, discrimination, denial, fear, faceless, neurological, cure, treatments, symptoms, advocacy, awareness, neurologist, diagnosis, closet, gene-positive, at-risk, at risk, CHDI

Huntington's disease, loneliness, and love
Wednesday, March 23, 2011
Standing by HD people is the right thing to do.
Comments (4) | Tags: love, genetic, Huntington's, father, mother, daughter, juvenile Huntington's, symptoms, at-risk, at risk, gene-positive, wife, tested negative, tested positive, diagnosis, warrior, nursing home, Terry Leach, support group, caregiving, caregiving

A cascade of emotions about Huntington’s disease
Monday, March 14, 2011
Memories, doubts, and the aftermath of exiting the HD closet.
Comments (0) | Tags: Huntington's, solidarity, testing, genetic testing, wife, mother, daughter, tested positive, gene-positive, psychologist, diagnosis, symptoms, tested negative, orphan disease, discrimination, CHDI, Yale, social justice, neurological, activism, activist, closet, Alnylam, treatment, cure, research, RNA interference

Huntington’s support group: seeking solidarity, fighting denial
Thursday, March 3, 2011
I connected with my 'HD family.'
Comments (0) | Tags: Huntington's, denial, support group, symptoms, gene-positive, mother, diagnosis, wife, daughter, father, death, caregiver, caregiving, at-risk, tested negative, closet, CHDI Foundation, CHDI, gene, nursing home, warrior, sister, tested, testing, research, trials, genetic, scientists, drug, activist, hope

Coming down from coming out: recharging the activism batteries
Sunday, February 27, 2011
Revealing my gene-positive status has been an intense experience.
Comments (0) | Tags: activism, research, scientist, gene-positive, HD-positive, discrimination, insurance, pre-existing condition, closet, stigma, Huntington's, mother, daughter, wife, trial, Charles Sabine, coming out, brain, neuron, symptoms, cure, treatments, coping, Alnylam, advocacy, genetic, RNA interference, workaholic

'Drug hunters' bring hope to Huntington's families
Monday, February 21, 2011
'I can see that we're getting to the final stretch.'
Comments (1) | Tags: Huntington's, treatment, cure, CHDI, Robert Pacifici, Michael Hayden, huntingtin, genetic, Isis, Alnylam, brain, gene, synaptic dysfunction, synapse, chorea, symptoms, gene-positive, coenzyme Q-10, creatine, trehalose, mitochondria, BDNF, depression, receptor, Rhes, research, science, scientist, drug hunter, hope

Feeling like an alien: going public about Huntington's
Monday, January 31, 2011
My speech will be posted to the web.
Comments (3) | Tags: disabled, brain, Huntington's, stigma, mother, diagnosis, discrimination, tested positive, closet, activist, pre-existing condition, gene-positive, Vertex, CHDI, genetic, coming out, at-risk, support group, going public

Memories of the DNA car
Monday, January 10, 2011
The Corolla reminded me that I was HD-positive.
Comments (0) | Tags: Obama, grandfather, Yale, carrier, Huntington's, mother, symptoms, genetic, defect, death, grandmother, nursing home, diagnosis, warrior, HD-positive, gene-positive, DNA, Chargers, CHDI, HDSA, HDSA-San Diego, cure, research, daughter, wife, activism, clinic, symptomatic, gene, Isis

The best Christmas gift of all
Friday, December 24, 2010
I remained symptom-free in 2010.
Comments (0) | Tags: Huntington's, clinic, tested positive, mother, symptoms, depression, mood, chorea, Center of Excellence, cognitive, test, testing, gene-positive, death, Huntington's Disease Drug Works, trehalose, coenzyme Q-10, omega-3, blueberry, creatine, Brazil, anxiety, faith, spirituality, psychotherapy, hope, at-risk, diagnosis, genetic, genetic testing

The mission of a lifetime
Thursday, December 16, 2010
I will keynote the HD Super Bowl on February 7.
Comments (1) | Tags: Huntington's, cure, CHDI, Robi Blumenstein, dementia, cognitive, gene-positive, symptoms, mother, Charles Sabine, closet, Brazil, diagnosis, death, advocate, support group

Vertex and the new wave of Huntington's research
Wednesday, December 8, 2010
Leading biotech firm has two teams working on HD.
Comments (2) | Tags: Vertex, gene-positive, brain, Huntington's, cure, treatment, Isis, Alnylam, CHDI, genetic, protein, FDA, misfold, huntingtin, Hereditary Disease Foundation, neurogenesis

Globalizing the fight against Huntington's
Friday, December 3, 2010
'Enroll-HD' aims to speed up research.
Comments (0) | Tags: Huntington's, mother, at-risk, Enroll-HD, CHDI, gene-positive, HD-positive, Brazil, Associação Brasil Huntington, Nancy Wexler, Alice Wexler, Latin America, Venezuela, Maracaibo, clinical trial, cure, treatment, guinea pig, neurological, genetic, gene

Enjoying the life we have left
Friday, November 5, 2010
At-risk and HD-positive people need and deserve a break.
Comments (3) | Tags: Huntington's, at-risk, tested, asymptomatic, symptoms, HD-positive, gene-positive, HSG, Martha Nance, Leslie Thompson, HDSA-San Diego, HDSA, Vertex, exercise, mother, daughter, father, Charles Sabine, sleep, stem-cell, stem cell, CHDI, scientist

An expedition to the brain
Thursday, October 21, 2010
Let's rally around Maria Shriver's call to halt disease!
Comments (0) | Tags: Huntington's, brain, Shriver, Alzheimer's, Obama, gene-positive, mother, Bush, cure, cure industry, biotech, leadership, civil rights

Losing control, seeking connections
Monday, October 11, 2010
As I approach my destiny with HD, I'll need to build ever stronger ties to people.
Comments (0) | Tags: Huntington's, gene-positive, mother, wife, daughter, going public, Isis, Isis Pharmaceuticals, genetic, oligonucleotide, RNA, antisense, cure, symptoms, brain, CHDI, testing, tested positive, HD-positive, stigma, coming out, come out

Out of the closet and on to the cure
Saturday, September 25, 2010
I took my biggest step ever in revealing my gene-positive status.
Comments (3) | Tags: Vertex, Brazil, gene-positive, family, mother, father, wife, daughter, insurance, Huntington's, CHDI, warrior, symptoms, genetic, geneticist, tested negative, tested positive, Terry Leach, juvenile HD, HDSA-San Diego, Obama, brain, Isis

'More to lose than ever'
Saturday, September 18, 2010
Living gene-positive for HD has made me a better person.
Comments (0) | Tags: gene-positive, Huntington's, symptoms, mother, father, daughter, denial, at-risk, warrior, Brazil, HDSA, research, fundraising, support, death, faith, love

Living in limbo
Monday, September 13, 2010
I wonder about my gene-positive status: is this some kind of cruel joke?
Comments (1) | Tags: tested positive, genetic, symptoms, Huntington's, mother, psychiatric, genetic, genetic defect, brain, modifier gene, memory, exercise, geneticist, gene-positive, HDSA-San Diego, HDSA, treatment, cure, Vertex, wife, daughter

My friend, the fast lane
Tuesday, August 31, 2010
Swimming helps me cope with living at risk.
Comments (6) | Tags: Fastlane, Huntington's, gene-positive, at risk, mother, symptoms, daughter, wife, exercise, HDSA, Huntington's Disease Drug Works, LaVonne Goodman, Obama, swim, swimming, brain

Traveling across America, togetherness and memories
Thursday, August 5, 2010
Unsure about my future, I wanted an extra special vacation.
Comments (1) | Tags: gene-positive, Huntington's, mother, daughter, wife, tested positive, psychiatric, symptoms, genetic, HDSA-San Diego, HDSA, CHDI, father, Yale, Robi Blumenstein, warrior

Charting new territory: going public about HD
Monday, June 14, 2010
I'll learn as I go.
Comments (0) | Tags: gene-positive, Huntington's, disease, diagnosis, mother, wife, daughter, at-risk, Brazil, God, going public, closet, going public, MRI, Isis Pharmaceuticals, oligonucleotide, Associação Brasil Huntington, Teilhard, coming out, discrimination

God, HD and the meaning of life
Monday, June 7, 2010
Our cause fuels the great movement for human progress.
Comments (0) | Tags: treatment, cure, Huntington's, disease, God, gene-positive, faith, theology, Catholicism, science, evolution, Teilhard, Darwin, Catholic, research, noosphere, evil, suffering, juvenile Huntington's, genetic, Edgemoor, father, mother, daughter, wife, activism, activist, HDSA, brain, social justice, Bible, Jesuit, Francis Collins, polyglutamine, cancer, gene, oligonucleotide, antisense, technology, abortion, health care, discrimination, cross, Christ, humanity, mutation, resurrection, spirit, spiritual, spirituality, consciousness, conscious, meaning, nervous, energy, psychotherapy, therapy, psychotherapist, psychoanalyst, psychiatrist, escapism, denial, mind coach, mind, huntingtin, soul, reflection, collective, knowledge, love, Christianity, Christian, religion, mysticism, lab, eugenics, tested positive, test, genetic testing, PGD, healthy, CHDI, Isis Pharmaceuticals, gene-positive

'Dad, could you get HD?'
Wednesday, May 26, 2010
I revealed my gene-positive status to my daughter.
Comments (0) | Tags: daughter, gene-positive, Huntington's, disease, Terry Leach, juvenile Huntington's, tested, test, mother, wife, HDSA-San Diego, Shoot to Cure HD, Chargers, Huntington's Disease Drug Works, came out, testing, at-risk, come out, creatine, supplement, truth, symptoms

A perfect day: the sunset of a meaningful life
Thursday, May 20, 2010
Even while facing HD, Steve and Gayle enjoyed every minute together.
Comments (1) | Tags: Huntington's, disease, death, gene-positive, premanifest, brain, caregiver, love, juvenile Huntington's, mother, father, son, daughter, warrior, feeding tube, San Diego, Chargers, wife, support, support group, HDSA-San Diego, HDDW, LaVonne Goodman, at-risk, exercise, symptoms, death

The point of no return
Saturday, April 17, 2010
How do you leave the closet about a disease that will deeply alter people's perceptions of your abilities?
Comments (2) | Tags: Huntington's disease, gene-positive, closet, mother, symptoms, discrimination, daughter, wife, Yale, test, coming out, Giamatti, cure, activism, tested negative, testing, genetic testing, genetic, HDSA-San Diego, advocacy, psychotherapist, freedom, Edgemoor, wheelchair, at-risk, at risk, Race Across America, H.R. 678

Good-bye, pre-existing conditions!
Friday, March 26, 2010
The new health care law will finally guarantee us coverage and care.
Comments (3) | Tags: pre-existing condition, Huntington's, HDSA-San Diego, symptoms, Obama, gene-positive, tested positive, insurance, at risk, at-risk, mother, tetrabenazine, discrimination, personalized medicine, testing, psychotherapist, stress, coming out, family, families

Aiming for HD clinical trials
Wednesday, March 3, 2010
It's not just hope: there's practical planning for making the medicines.
Comments (0) | Tags: CHDI, Huntington's, gene, clinical trial, gene-positive, clinic, premanifest, oligonucleotides, RNA interference, Lou Gehrig's, mitochondria, brain, motor, cognitive, psychiatric, metabolic, dysfunction, FDA, symptoms, MRI, TRACK-HD, death, UHDRS, biomarker, trial, side effect, drug, huntingtin, finger-tapping, tongue, HD-affected, Phase III

A restless soul at the HD research meeting
Sunday, February 14, 2010
Cure HD initiative keeps its team thinking hard.
Comments (4) | Tags: cure, Huntington's, disease, scientist, science, CHDI, HDSA-San Diego, Steven Seagle, It's a Bird, symptoms, mother, genetic mirror, genetic, premanifest, gene-positive, MRI, gene, oligonucleotide, RNA interference, drug, Robi Blumenstein, Michael Hayden

A Super Sunday HD story
Friday, February 5, 2010
The day will be just as intense for me as it is for the players in the championship.
Comments (0) | Tags: football, sports, mother, Huntington's, tested, positive, Chargers, San Diego, research, cure, gene-positive, symptoms, emotions, fundraising, daughter, untested, CHDI, donor, neurological

When the pain brings a smile
Sunday, January 24, 2010
My wife ran the Carlsbad Half Marathon to help me beat HD.
Comments (0) | Tags: wife, Huntington's, HDSA-San Diego, gene-positive, positive test, marathon, risk, mother, daughter, symptomatic, support, caregiving, genetic mirror, father, warrior, test, husband

Squeezing in the life
Thursday, January 14, 2010
After turning 50, I feel a new urgency about stopping HD.
Comments (0) | Tags: gene-positive, Huntington's, symptoms, HDSA-San Diego, Isis Pharmaceuticals, mother, sister, Alice Wexler, daughter, Hereditary Disease Foundation, father, God, faith, science, advocacy

Feel the love: a family faces juvenile Huntington's disease
Wednesday, December 2, 2009
No matter how fateful HD's symptoms, the inner mind remains vibrant.
Comments (7) | Tags: love, Huntington's, disease, Terry Leach, juvenile Huntington's disease, genetic test, mother, symptoms, mind, genetic mirror, humanity, caregiver, gene-positive, tested negative, activist, neurological

Smelling the flowers at Thanksgiving
Wednesday, November 25, 2009
Each moment is unique and will not return.
Comments (3) | Tags: Huntington's, daughter, gene-positive, brain, disease, genetic test, pregnancy, abortion, mother

Creating hope
Sunday, October 25, 2009
We can't just feel hope. We need to live hope.
Comments (0) | Tags: Huntington's disease, Huntington's, tested positive, gene-positive, father, mother, daughter, at risk, hope, treatments, cure, symptoms, Isis, Isis Pharmaceuticals, CHDI, genetic mirror, Martha Nance, Jody Corey-Bloom, HDSA-San Diego, HDSA, Chargers, Race Across America, Center of Excellence, Obama

My new profession: HD activist
Tuesday, October 13, 2009
Suddenly it hit me: I have become a very different person because of my gene-positive status.
Comments (0) | Tags: Huntington's disease, Huntington's, gene-positive, tested positive, HDSA-San Diego, daughter, mother, father, wife, symptoms, fundraising, stem-cell, research, BDNF, patient, success, disease, advocacy, cure

An experiment and a death
Saturday, October 3, 2009
As I lay in an MRI machine, news came of the death of my father, the HD warrior.
Comments (3) | Tags: MRI, Huntington's, Huntington's disease, mother, father, denial, gene-positive, outburst, California, relationship, brother, sister, compassion, cure, treatment, CHDI, symptoms, chorea, psychology, UCSD, COHORT, Parkinson's, brain

In the midst of the hurricane
Saturday, September 19, 2009
An overload of emotions forces me to focus on life's essentials.
Comments (2) | Tags: Huntington's disease, hurricane, symptoms, HD, HDSA, HDSA-San Diego, psychiatric, CHDI, Ph.D., gene-positive, Pacifici

Pondering an exit from the HD closet
Thursday, August 20, 2009
"I felt emotionally paralyzed."
Comments (0) | Tags: Huntington's disease, AIDS, cancer, gene-positive, closet, experiment, mother, denial, wife, daughter, blog, privacy, coming out, going public, HD, sympathy, death, ritual, anonymity, orphan disease, discrimination, genetic testing, CHDI, Clinton, Genome, Guthrie, House, at-risk, symptoms

A new attitude about Huntington's disease
Thursday, July 23, 2009
If we won't help ourselves, why should anybody else care?
Comments (6) | Tags: Huntington's disease, symptoms, genetic defect, mother, brain, cells, Robi Blumenstein, CHDI, drug, gene-positive, denial, HD, activism, activist, treatment, drug pipeline, families, drug discovery, anonymous, MRI, smell, motor skills, time bomb, family, at-risk, testing, test, attitude, neurologist, clinic, HDSA, Center of Excellence, trial, Jim Calhoun, Lessons from the Ancients, fundraising, advocacy, House Bill 678, Huntington's Disease Advocacy Center

Great reasons to be a guinea pig
Wednesday, July 15, 2009
Everybody can help with vital Huntington's research.
Comments (1) | Tags: Huntington's disease, Huntington's, genetic, tested positive, brain, symptoms, suicie, activist, HDSA-San Diego, HDSA, experiments, clinical trials, scientists, guinea pig, gene-positive, at-risk, affected, drugs, Martha Nance, LaVonne Goodman, Huntington's Disease Drug Works, HDDW, mother, defect, MRI, National Research Roster, trehalose, coenzyme Q-10, omega, fish oil, blueberry, creatine, neuropsychological, cocktail, motor control, stability, A Beautiful Mind, balance, asymptomatic, treatments, Center of Excellence
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Words Used in Gene’s Blog
Words are scaled by number of uses. Click on a word to trace its use in blog entries.
"can do" spirit    9/11    A Beautiful Mind    abortion    accident    accountability    activism    activist    adoption    advocacy    advocate    advocates    affected    AIDS    Alice Wexler    ALN-HTT    Alnylam    ALS    Alzheimer's    America    anonymity    anonymous    antisense    anxiety    Apollo    ASO    assisted suicide    Associação Brasil Huntington    asymptomatic    at risk    at- risk    at-risk    at-risk status    attitude    awareness    balance    battles    BDNF    behavioral    belief    Bible    biology    biomarker    biotech    biotechnological    biotechnology    blessing    blog    blueberry    Bonnie Hennig    brain    Brazil    brother    Bush    CAG repeats    CalAsia Pharmaceuticals    California    came out    cancer    care    care facility    Care2Cure    caregiver    caregiving    carrier    catholic    Catholicism    cells    cellular therapy    Center of Excellence    cerebral    Chargers    Charles Sabine    CHDI    CHDI Foundation    child    China    chorea    Christ    Christian    Christianity    chronic traumatic encephalopathy    CIRM    civil rights    clinic    clinical    clinical trial    clinical trials    Clinton    closet    cocktail    code    coenzyme Q-10    cognition    cognitive    cognitive decline    COHORT    collective    come out    coming out    compassion    Congress    conscious    consciousness    cope    coping    cortex    counseling    creatine    cross    cure    cure industry    cycle of life    Darwin    daughter    death    decline    defect    defective    degeneration    dehydrated    dementia    denial    depressed    depression    DFS    diagnosis    diet    Differential Fragment-Based Screening    Dinah Sah    disability    disabled    discrimination    disease    disorder    DNA    doctor    Don Cleveland    donor    drug    drug discovery    drug hunter    drug pipeline    drugs    dysfunction    easter    economic crisis    Edgemoor    Egypt    embryonic stem cells    emotions    energy    Enroll-HD    escapism    eugenics    evil    evolution    exercise    experiment    experiments    faceless    faith    families    family    fantasize    Fastlane    fatal    father    FDA    fear    feeding tube    fight    financial crisis    finger-tapping    fish oil    Flash of Genius    football    forsaken    Francis Collins    Frank Bennett    freedom    fundraising    gene    gene positive    gene silencing    gene therapy    gene-carrying    gene-negative    gene-positive    gene-silencing    generation    genetic    genetic clock    genetic counseling    genetic defect    genetic mirror    genetic test    genetic testing    geneticist    Genome    Genome Project    genomic    get tested    Giamatti    God    going public    Good Friday    granddaughter    grandfather    grandmother    grandparent    grassroots    grief    guinea pig    Guthrie    H.R. 678    HD    HD Buzz    HD closet    HD Parity Act    HD war chest    HD warrior    HD-affected    HD-free    HD-negative    HD-positive    HDDW    HDSA    HDSA Person of the Year    HDSA-San Diego    health    health care    health care reform    healthcare    healthy    heatlh    Hereditary Disease Foundation    Holy Week    honesty    hope    horror    House    House Bill 678    HSG    humanity    huntingtin    huntingtin suppression    huntington's    Huntington's closet    Huntington's disease    Huntington's Disease Advocacy Center    Huntington's Disease Drug Works    Huntington's warrior    hurricane    hurtling towards death    husband    ignorance    immobility    incurable    India    induced pluripotent stem cell    innovation    insomnia    instinct    Institute for Regenerative Cures    insurance    Interstate Highway System    inventors    Isaac Asimov    Isis    Isis Pharmaceuticals    israelite    It's a Bird    Jan Nolta    Jesuit    Jesus    Jim Calhoun    Jim Gusella    Jody Corey-Bloom    Johns Hopkins University    Judy Roberson    juggling    juvenile HD    juvenile Huntington's    juvenile Huntington's disease    Katie Moser    Keith Elliston    knowledge    lab    laser-guided missile    Latin America    LaVonne Goodman    leader    leadership    legacy    Leslie Thompson    lessons    Lessons from the Ancients    Lewy body disease    Lou Gehrig's    Louise Vetter    love    Lundbeck    Maracaibo    marathon    marriage    Marshall Plan    Martha Nance    mask    meaning    Medi-Cal    Medicaid    Medicare    medication    meditation    medium spiny neuron    Medtronic    memory    mercy killing    mesenchymal stem cell    metabolic    Michael Hayden    mind    mind coach    misfold    mitochondria    modifier gene    mood    mood swings    morale    mortality    mother    motor    motor control    motor skills    MRI    mutant    mutation    mysticism    Nancy Wexler    nation    National Football League    National Institutes of Health    National Research Roster    negative    nervous    Neurobic    neurodegenerative    neurogenesis    neurological    neurologist    neuron    neuropsychological    neuroscience    neuroscientist    neuroscientists    newsletter    NINDS    noosphere    Novartis    nursing home    Obama    observational study    observational trial    oligonucleotide    oligonucleotides    omega    omega-3    onset    orphan    orphan disease    outburst    outsourced    P4 medicine    Pacifici    Parity Act    Parkinson's    passover    patient    PDE inhibitor    persevere    Person of the Year    personalized medicine    Pfizer    PGD    Ph.D.    pharmaceutical    Phase I    Phase II    Phase III    Phebe Hedges    polyglutamine    positive    positive genetic test    positive test    pre-existing condition    pre-manifest    PREDICT-HD    pregnancy    premanifest    presymptomatic    privacy    Promised Land    protein    psychiatric    psychiatrist    psychoanalyst    psychologist    psychologists    psychology    psychotherapist    psychotherapy    psychotic    public    pump    Race Across America    ravaged    receptor    reflection    rehabilitation facility    relationship    relaxing    religion    religious traditions    research    researcher    Resurrection    Rhes    risk    ritual    RNA    RNA interference    RNAi    Robert Pacifici    Robi Blumenstein    San Diego    science    scientist    scientists    Scripps Research Institute    seizure    sex    shaking    Shoot to Cure HD    Shriver    side effect    siRNA    sister    sleep    smell    social justice    Social Security    solidarity    son    soul    Spanish    spirit    spiritual    spirituality    sports    stability    stem cell    stem-cell    stem-cell oversight    sterilization    sterilize    Steven Seagle    stigma    strength    stress    striatum    stroke    struggle    success    suffering    suicide    suicie    supplement    supplements    support    support group    supporters    survival    swim    swimming    sympathy    symptomatic    symptoms    synapse    synaptic dysfunction    sypmtoms    systems biology    technology    Teilhard    Terry Leach    test    tested    tested negative    tested positive    testing    testing positive    tetrabenazine    theology    therapeutic    therapies    therapist    therapy    Thich Nhat Hanh    time bomb    tinkerers    togetherness    tongue    TRACK-HD    transitions    treatable    treatment    treatments    trehalose    trial    trials    trinucleotide    truth    UCSD    UHDRS    unemployment    University of San Diego    untested    urgency    Venezuela    Vertex    Wall-E    warrior    WeAreHD.org    website    wheelchair    wife    workaholic    Xenazine    Yale