Saturday, December 8, 2012
Lots of people are in my corner.
| 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
Sunday, December 18, 2011
A young woman prepares for the worst and prays for the best.
| 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
Monday, November 7, 2011
Watching Private Practice left me feeling painfully mortal.
| 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
Monday, October 31, 2011
Testing is no longer just a personal matter.
| 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
Monday, October 3, 2011
We need informed dialogue.
| Tags: CHDI, Hereditary Disease Foundation, Huntington's Disease Drug Works, Huntington's, brain, treatment, cure, HD-positive, clinical trial, observational trial, Guthrie, Congress, gene, genetic, genetic testing, care, clinic, advocacy, support group, research, genetic counseling, caregiver, nursing home, Nancy Wexler, Alice Wexler, at-risk, Venezuela, genetic test, genetic, drug, LaVonne Goodman, HDSA Person of the Year, pharmaceutical, scientist, Isis Pharmaceuticals
Friday, September 2, 2011
Your personal testimony is the best way to fight HD's stigma.
| 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
Thursday, July 28, 2011
We must all chip in to help find treatments.
| 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
Wednesday, May 11, 2011
It's time to conquer HD!
| 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
Monday, April 18, 2011
I'm going the extra mile for the cause.
| Tags: mother, Huntington's, diagnosis, testing positive, cure, treatment, daughter, insurance, wife, tested negative, genetic test, psychotherapist, activism, activist, discrimination, genetic, caregiver, CHDI, CHDI Foundation, Alnylam, NINDS, symptoms, at-risk
Saturday, April 2, 2011
It's time to remove our masks.
| 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
Wednesday, March 23, 2011
Standing by HD people is the right thing to do.
| 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
Thursday, March 3, 2011
I connected with my 'HD family.'
| 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
Monday, January 31, 2011
My speech will be posted to the web.
| 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
Friday, December 24, 2010
I remained symptom-free in 2010.
| 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
Friday, December 3, 2010
'Enroll-HD' aims to speed up research.
| 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
Friday, November 5, 2010
At-risk and HD-positive people need and deserve a break.
| 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
Saturday, September 18, 2010
Living gene-positive for HD has made me a better person.
| Tags: gene-positive, Huntington's, symptoms, mother, father, daughter, denial, at-risk, warrior, Brazil, HDSA, research, fundraising, support, death, faith, love
Monday, June 14, 2010
I'll learn as I go.
| 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
Wednesday, May 26, 2010
I revealed my gene-positive status to my daughter.
| 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
Thursday, May 20, 2010
Even while facing HD, Steve and Gayle enjoyed every minute together.
| 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
Saturday, April 17, 2010
How do you leave the closet about a disease that will deeply alter people's perceptions of your abilities?
| 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
Friday, March 26, 2010
The new health care law will finally guarantee us coverage and care.
| 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
Thursday, August 20, 2009
"I felt emotionally paralyzed."
| 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
Thursday, July 23, 2009
If we won't help ourselves, why should anybody else care?
| 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
Wednesday, July 15, 2009
Everybody can help with vital Huntington's research.
| 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
Words Used in Gene’s Blog
Words are scaled by number of uses. Click on a word to trace its use in blog entries.