Friday, December 21, 2012
I'm lucky to have good health.
| Tags: mother, diagnosis, Huntington's, tested positive, love, God, heatlh, asymptomatic, onset, advocate, treatment, closet, Brazil, HD warrior, faith, Catholic, Jesus, family, wife, daughter, anxiety
Friday, August 3, 2012
Testing could start in two years.
| Tags: stem cell, mesenchymal stem cell, brain, Huntington's, testing, CIRM, Jan Nolta, symptomatic, clinical, BDNF, gene therapy, cellular therapy, neuron, symptoms, Alzheimer's, Parkinson's, therapy, FDA, psychiatric, Bush, embryonic stem cells, induced pluripotent stem cell, AIDS, therapies, advocate, advocacy, activist, Judy Roberson, striatum, RNA interference, siRNA, antisense, huntingtin, drug, neurodegenerative, pharmaceutical, cocktail, hope, mother, scientist, CHDI, treatment
Monday, April 2, 2012
Event can help inform and galvanize the community.
| 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
Tuesday, March 20, 2012
We are turning the tide from 'incurable to 'treatable.'
| Tags: mother, Huntington's, treatment, cure, dementia, fatal, positive test, symptoms, side effect, therapy, researcher, clinical trial, therapies, hope, incurable, treatable, denial, scientist, supplement, RNA interference, brain, Robert Pacifici, CHDI, genome, DNA, protein, biotech, systems biology, P4 medicine, neurodegenerative, modifier gene, gene, huntingtin, mutation, genetic, patient
Tuesday, February 21, 2012
The strategic plan is open for comment.
| Tags: care, cure, grassroots, advocate, Louise Vetter, therapeutic, HDSA Person of the Year, research, scientist, CHDI, Hereditary Disease Foundation, advocacy, treatment, cure, biotechnology, brain, Center of Excellence, clinic, awareness, clinical trial, counseling, patient, nursing home, Guthrie
Thursday, February 16, 2012
Practical strategies for getting people involved.
| Tags: Huntington's, denial, symptoms, stigma, research, LaVonne Goodman, Louise Vetter, Huntington's Disease Drug Works, clinical trial, discrimination, diagnosis, support group, advocacy, doctor, Center of Excellence, genetic, caregiving, genetic testing, psychologist, neurologist, genetic counseling, treatment, juvenile HD, testing, awareness, cure
Monday, January 2, 2012
Alnylam presents a highly positive report.
| 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
Wednesday, November 30, 2011
Scientists aren't ready to include me.
| 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
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
Wednesday, September 21, 2011
I'm in the gray zone between my genetic test and HD onset.
| 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
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
Wednesday, August 24, 2011
The stakes are enormous: treatments – or another generation lost to HD.
| 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
Tuesday, June 21, 2011
It's time to brainstorm on improving our cause.
| Tags: Huntington's, mother, wife, daughter, gene-positive, research, Brazil, scientist, cure, treatment, Alnylam, symptoms, onset, caregiving, solidarity
Wednesday, June 8, 2011
A very fine line exists between passion and obsession.
| 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
Wednesday, May 25, 2011
Alnylam plans to apply for a clinical trial in 2012.
| 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
Monday, May 2, 2011
In the next ten years, we can defeat HD.
| 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
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
Monday, March 14, 2011
Memories, doubts, and the aftermath of exiting the HD closet.
| 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
Monday, February 21, 2011
'I can see that we're getting to the final stretch.'
| 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
Sunday, February 13, 2011
I have left the darkness surrounding HD.
| Tags: mask, Huntington's, CHDI, activist, Robi Blumenstein, closet, stigma, genetic, cope, cure, treatment
Wednesday, December 8, 2010
Leading biotech firm has two teams working on HD.
| Tags: Vertex, gene-positive, brain, Huntington's, cure, treatment, Isis, Alnylam, CHDI, genetic, protein, FDA, misfold, huntingtin, Hereditary Disease Foundation, neurogenesis
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
Monday, September 13, 2010
I wonder about my gene-positive status: is this some kind of cruel joke?
| 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
Monday, June 7, 2010
Our cause fuels the great movement for human progress.
| 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
Wednesday, May 5, 2010
Our movement stands at a crossroads.
| Tags: HDSA, care, cure, research, treatment, mother, tested positive, father, exercise, symptoms, diagnosis, Center of Excellence, California, CHDI, Spanish, Care2Cure, advocacy, Huntington's, disease
Thursday, April 29, 2010
Spread the word about HD Awareness Month and the dream of a disease-free world.
| Tags: fear, AIDS, Parkinson's, awareness, cure, brain, at risk, genetic, huntingtin, gene, discrimination, insurance, disability, Genome, genomic, code, treatment, genetic testing, biotechnology, protein, Isis Pharmaceuticals, Lou Gehrig's, Alzheimer's, stroke, orphan
Saturday, October 3, 2009
As I lay in an MRI machine, news came of the death of my father, the HD warrior.
| 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
Wednesday, September 23, 2009
In the fight against HD, we know how much we depend on our supporters.
| Tags: brain, disorder, Huntington's, disease, mother, daughter, at risk, symptoms, HDSA, supporters, solidarity, stigma, advocate, stem cell, disability, treatment, cure
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
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