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
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
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
Thursday, May 17, 2012
But much work remains to be done.
| Tags: advocacy, advocate, juvenile Huntington's, Social Security, Huntington's, Louise Vetter, Parity Act, genetic test, diagnosis, disability, Center of Excellence, Martha Nance, chorea, cognitive, behavioral, dementia
Thursday, March 8, 2012
Spreading the message about progress is crucial.
| 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
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 9, 2012
How do we convince relatives to join the cause?
| 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
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
Monday, January 23, 2012
Scientists receive millions for the search for treatments.
| Tags: California, CIRM, stem-cell, stem cell, research, advocate, advocacy, treatments, cure, Obama, Alzheimer's, Huntington's, activist, Jan Nolta, Leslie Thompson, clinical trial, genetic, gene, BDNF, mesenchymal stem cell, brain, PGD, medium spiny neuron, symptoms
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
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, 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
Monday, April 25, 2011
There's no secret ingredient or spectacular formula for success.
| 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
Wednesday, April 13, 2011
We need aggressive advocacy to pass disability bill.
| Tags: Huntington's, disability, Parity Act, advocacy, advocate, chorea, cognitive, mother, awareness, Lou Gehrig's
Thursday, December 16, 2010
I will keynote the HD Super Bowl on February 7.
| Tags: Huntington's, cure, CHDI, Robi Blumenstein, dementia, cognitive, gene-positive, symptoms, mother, Charles Sabine, closet, Brazil, diagnosis, death, advocate, support group
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
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