Saturday, April 14, 2012
Stephen Hawking still strong at 70.
| 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
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
Sunday, January 29, 2012
That's my daily challenge as an advocate.
| 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
Sunday, January 8, 2012
It's time to stop feeling timid!
| 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
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 21, 2011
It's a time of family and feasts – and gratitude.
| Tags: Huntington's, mother, father, daughter, wife, warrior, diagnosis, testing positive, symptoms, tested negative, caregiver, scientist, pharmaceutical, gene-positive, treatments, cure
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, 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
Saturday, July 9, 2011
The honor is for the battle we all fight.
| 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
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
Saturday, May 28, 2011
Please call your reps and senators on national call-in day, Tuesday, May 31!
| Tags: Huntington's, Parity Act, brain, symptoms, caregiver, caregiving, warrior, mother, father, Social Security, Medicare, nursing home, Medicaid, supplements, tested positive, meditation, exercise, daughter, juvenile Huntington's, discrimination, Medi-Cal, stem-cell, chorea, behavioral, disabled, wheelchair, disability, mutant, Louise Vetter
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
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
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
Wednesday, December 2, 2009
No matter how fateful HD's symptoms, the inner mind remains vibrant.
| 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
Sunday, April 26, 2009
After fighting for his wife, this dedicated caregiver is now ill and all alone.
| Tags: Huntington's disease, HD, warrior, caregiver, cure, mother, father, symptoms, tested positive, cognitive decline, memory, genetic defect, dehydrated, rehabilitation facility, care facility, stroke, transitions, ravaged, brain, cycle of life, battles
Sunday, April 12, 2009
It's time to renew our fight against this devilish disease.
| Tags: huntington's, catholic, israelite, passover, easter, CAG repeats, trinucleotide, faith, persevere, belief, God, Jesus, Egypt, cure, treatments, forsaken, caregiver, Holy Week, WeAreHD.org, Good Friday, Bible, Promised Land, Christ, Resurrection, religious traditions, families
Words Used in Gene’s Blog
Words are scaled by number of uses. Click on a word to trace its use in blog entries.