Tonight our incredible special guest is our very own Dr.
LaVonne Goodman…
Dr. Goodman writes that over the past decade a number of
over-the-counter (OTC) supplements and prescription drugs have been reported to
slow down progression of impairment in animal models of Huntington's disease
(HD).She says that whether Huntington's
people "should" take supplements for potential human benefit with
reported benefit is unknown. This author's opinion has evolved over the years
and she is now more skeptical about using mouse model results than when she
initiated the HDDW trials. What follows will be a supplement update.
But, she says -- to keep this discussion in perspective --
it is much more likely that a healthy life style will give greater benefit than
any present supplement.
Tonight our incredible featured guest is Dr. Stuart Blatt,
Physical Therapist who has 25 years of clinical experience, treating persons
with various neurological injuries. He received his doctoral degree from
Michigan State University in the area of Adult Learning. He owns his own company called Therapists on the Move which
is a mobile outpatient clinic serving people with progressive neurological diseases
and he is also the CEO and founder of A.S.C.E.N.D, a not for profit
organization which we will learn about tonight.
Dr. Blatt has taught clinical neurology and patient
management classes for six years in the Physical Therapy Department at the
University of Michigan-Flint.
He speaks nationally and within the state of Michigan on the
care of person’s with Huntington’s Disease, Parkinson’s Disease and Multiple
Sclerosis TONIGHT’S TOPICS OF INTEREST ARE:
Exercise and HD
HD Camp: A mini rehab retreat
Advocacy programs for people with HD
Find Dr. Stuart Blatt on Facebook
Email: blattstu@msu.edu
QUESTIONS:
What
brought you to the field of adult learning and treating persons with
neurological challenges?
How did
you start Therapists on the Move, mobile outpatient clinic?
Tell us
about ASCEND and how this organization was formed…
What kind
of speaking engagements have you been doing lately?
What are
you teaching at the Physical Therapy Department at the University of
Michigan-Flint?
What have
you learned about exercise and Huntington’s disease?
How can
we get our H’Dears motivated to exercise?
Tell us
about the HD Camp…
What is
your philosophy about advocacy programs for people suffering with HD?
H4HD:Tonight our
incredible special guest is the esteemed Steven Finkbeiner, MD, PhD
Dr. Finkbeiner is Senior Investigator and Associate Director
of Neurologic Research at the Gladstone Institutes of Neurological Disease (GIND).
He is also the Director of the Taube-Koret Center for Huntington’s Disease
Research at Gladstone and the Hellman Family Foundation Alzheimer’s Disease
Research Program. He is also a Professor of Neurology and Physiology at the
University of California, San Francisco (UCSF).
Dr. Finkbeiner studies the molecular mechanisms that are
responsible for learning, memory and neurodegeneration. A better understanding
of the mechanisms that control memory formation in neurons will yield crucial
insights into the development and progression of neurodegenerative diseases—and
the memory disorders that often characterize them.
As one of the first investigators to join GIND in 1999, Dr.
Finkbeiner is best known for his pioneering work on neurodegenerative diseases.
He invented robotic microscopy, a new form of imaging that has helped unravel
cause-and-effect relationships in amyotrophic lateral sclerosis (ALS, or Lou
Gehrig’s disease), Huntington’s, Alzheimer’s and other neurodegenerative
diseases. Dr. Finkbeiner used his robotic microscope to resolve a long-standing
puzzle in Huntington’s disease. A study based on results from the microscope
became the most-cited paper in the field of neuroscience in the last decade.
With the help of Bay Area philanthropists, Dr. Finkbeiner
established the Taube-Koret Center in 2009 to accelerate the development of
drug therapies for patients suffering from conditions such as Huntington’s
disease.
Dr. Finkbeiner is Associate Editor of Autophagy and serves
on the editorial board of the Journal of Huntington’s Disease and BioMed
Central. He has received numerous awards for his work, including the Lieberman
Award, the Taube-Koret Prize and the Award for Outstanding Research Achievement
from Nature Biotechnology. He is a member of several scientific and
professional societies, including the American Neurological Association, the
Society for Neuroscience, the Society for Cell Biology and the Biophysical
Society. He is active in graduate training and is a member of the Neuroscience,
Biomedical Sciences and Medical Scientist Training Programs at UCSF.
In 1986, Dr. Finkbeiner earned a bachelor’s degree from
Wheaton College. He earned both an MD and a PhD in neuroscience from Yale
University
TALKING POINTS:
The Common Threads Strategy at Gladstone: Overcoming the
Valley of DeathAt present, no approved drugs exist that slow the
progression of any of the devastating neurodegenerative disorders, including
Huntington's—perhaps one of the most difficult and debilitating diseases we
face. As the drug-development process for therapies is so difficult and fraught
with financial risk, some refer to it as the Valley of Death. Few know how to
cross this barren landscape in order to emerge with solutions for patients.
To overcome these challenges, Gladstone scientists—led by
Dr. Steve Finkbeiner—employ a strategy called Common Threads. The Common
Threads strategy identifies biological characteristics shared among a host of
brain and movement disorders (including Alzheimer's, ALS, Huntington's and
Parkinson's) and pools research and resources to effectively and efficiently
create therapies for them.
Pooling resources among relatively common diseases (such as
Alzheimer's) with more rare diseases (such as Huntington's) encourages
investments in therapies for "orphan" diseases that rarely attract
the necessary funds for success. This gives hope to diseases such as
Huntington's, which for too long have been ignored by Big Pharma and many
funding bodies.
Rather than focusing on a single disease, as so many
institutions and institutional departments do, Gladstone scientists work in a
collaborative approach across disease. This saves time, money—and most
importantly—lives.
Thanks to Common Threads, Gladstone has already had
laboratory success in animal models to advance human health. For example: Dr.
Paul Muchowski (a close colleague of Dr. Finkbeiner) developed JM6, a chemical
compound that reduces the symptoms of both Huntington's and Alzheimer's.
Gladstone scientists believe that the Common Threads
approach offers the best hope for achieving our goal of having a cure for
Huntington's by 2020.
Recent Research Breakthroughs by Dr. Finkbeiner's Lab: Gladstone Scientists Identify Protein Form Linked to
Huntington's Disease.
Gladstone and Partners Receive $3.7 Million to Use Stem Cell
Technology for Huntington's Disease Research.
Gladstone Institutes Establishes Taube-Koret Center for
Huntington's Disease Research.
PREFACE. * I need to preface this first question… I’ve had
over 50 emails about this subject and many people in the HD community have
questions about this drug which is being marketed for chorea (Tetrabenizine,
Xenazine). There seems to be a lot of confusion about it and people are under
the impression that it is slowing their progression, but reading the black box
warnings on Lundbeck’s marketing materials they state that Xenazine can cause
depression, suicidal thoughts, suicidal actions, and further warning that
people should not start taking Xenazine if they are depressed or have untreated
depression that is not well controlled by medication and not to mention
psychiatric, nervous system and other side effects…
H4HD:Aren’t these
the symptoms of Huntington’s already and can you please speak to this subject?
H4HD:What is the
‘Valley of Death’ in the drug development world?
H4HD:Can you tell us
about the ‘Common Threads’ strategy in your lab?
H4HD:What have you
discovered about misfolded protein and neuronal death? (Gladstone News-Oct 30,
2011)
H4HD:Let’s talk
about iPS [induced pluripotent stem cells] and the $3.7 grant for the
consortium that was formed in 2009… (I heard a funny story about how you
obtained the first human skin cells)
H4HD:When and how
was the Taube-Koret Center formed?
H4HD:Are we still on
target to potentially have a cure for HD by the year 2020?
H4HD:Currently are
you seeking grant opportunities for research?
H4HD:What is next on
the agenda for you at the Gladstone Institutes?
Monday, May
14, 2012 Tonight
our incredible special guest is Jimmy Pollard from Massachusetts. Jimmy holds a
Master’s degree in Special Education from Fitchburg State College in
Massachusetts and a Bachelor’s degree from Fordham University in New York. He
has taught Special Education at the graduate level and served as Administrator
and Program Director of several Huntington's disease special care facilities in
New England, US. His
current career interests center on creating, developing and/or managing health
care and special education programs for those with neurologic conditions and
developmental challenges, as well as working in partnership with family carers (caregivers)
and lay advocacy associations around the world to advance their causes of professional
education and public awareness. As
an invited speaker at national HD meetings in Ireland, Scotland, England and
the United States Jimmy has been a featured speaker at meetings of the
International Huntington's Association, The European's Huntington Association,
the World Congress on HD as well as many HD Caregiver conferences in the US. He
has toured England and Wales speaking to healthcare professionals for the HD
Association of Great Britain. He is a regularly invited speaker at biennial meetings
of both the International and European Huntington’s Associations. Find
Jimmy Pollard on Facebook/curehuntingtons or email him at: jjpollard@comcast.net
H4HD:
Jimmy Pollard how are you tonight? What
brought you to the field of special education working with neurologic
conditions?
H4HD:
What fuels your passion for working with
HD families and caregivers?
H4HD:
Applied Behavior Analysis (brief
description): How can we apply these principals in HD?
H4HD:
Can you give us a few examples of
circumstances and solutions using ABA?
H4HD:
Why do we talk more about placement in nursing
homes but not enough about preparing for it?
H4HD:
What do you mean when you say, “We lose
site of the person when talking about nursing homes”?
H4HD:
Let’s talk about our kids… How can we
teach them to recognize cognitive decline in their family members? And how can
we give them the skills to cope with the changes?
H4HD:
You once told me, “We could be doing
more.” Can we talk about that? (US vs Europe)
H4HD:
What about respite care?
H4HD:
Tell us about The Guthrie Center…The
events…
Tonight we
are happy to welcome back our wonderful Dr. Goodman. She has just published
another great article on her website www.hddrugworks.org
titled; “Healthy Life Style, BDNF andNeuroplasticity”. We are going to be talking about how healthy life styles
can make a significant positive difference in Huntington’s disease. H4HD:Will you please explain what is BDNF and what
does it do? H4HD:Let’s explain to our listeners what
neuroplasticity is and how it is affected in HD… H4HD:Now let’s talk about the different factors
responsible for increasing BDNF… H4HD:Can we focus on the sleep factor? Why is it so
important to our body especially in HD? H4HD:Why do you suppose fatigue is so rampant in HD? H4HD:The other two factors being exercise and diet… (discussion) H4HD:What’s the best way to keep the caloric intake up during the day? H4HD:Why is alcohol so damaging in HD? H4HD:Do you think we will be seeing any clinical studies relating to these
factors for healthy life style living in HD?
Our
amazing incredible special guest tonight is the esteemed Dr. Michael Geschwind
from the UCSF Memory and Aging Center (UCSF-MAC) in San Francisco, California…
ACADEMIC POSITION:
Dr.
Michael Geschwind
Associate Professor of Neurology
Michael J. Homer Chair in Neurology
EDUCATION:
Dr.
Geschwind received his MD and PhD in neuroscience through the National
Institutes of Health-sponsored Medical Scientist Training Program at the Albert
Einstein College of Medicine in New York. He completed his internship in
internal medicine at the University of California, Los Angeles Medical Center,
his neurology residency at the Johns Hopkins University School of Medicine in
Baltimore and his fellowship in behavioral neurology at the UCSF Memory and
Aging Center (MAC). He joined the
Memory and Aging Center faculty in 2003 and is now an associate professor and
holds the Michael J. Homer Chair in Neurology.
RESEARCH INTERESTS:
Dr.
Geschwind's primary research interest is the assessment and treatment of
rapidly progressive dementias, including prion diseases, such as
Creutzfeldt-Jakob disease (CJD), autoimmune antibody-mediated dementias and
encephalopathies. He also has an active interest in movement disorders and
cognition, including Progressive supranucelar palsy (PSP), corticobasal
syndrome (CBS), and Huntington’s disease (HD). He is an active member of the
Huntington’s Study Group.
CLINIC:
Dr.
Geschwind evaluated patients with assorted dementias, including Alzheimer’s
disease, frontemproal dementia (FTD)-spectrum disorders (including PSP and
CBS), HD, leukoencephalopathies (including CADASIL), and other disorders. He
recently opened a new clinic for antibody-mediated autoimmune encephalopathy
and related disorders.
H4HD: Dr. Geschwind welcome to the show, how are you
tonight? H4HD:What brought you to the field of
Neurology and specifically Huntington’s disease? H4HD:What are the similarities in HD with
other frontemporal dementias? H4HD:What is antibody-mediated autoimmune
encephalopathy? H4HD:How can scientific research find
treatments that may translate to all of the rapidly progressing dementias? H4HD:Please tell us what information you
spoke about at the recent HD Symposium… H4HD:Tell us about the
clinical studies you are passionate about… H4HD:Can we talk about
CAB and Enroll HD? H4HD:Do you have a
message of hope to our H’Dears?
Our
incredible special guest tonight is Dr. Peg
Nopoulos. She received a Bachelor of Science degree from the University
of Iowa in 1985 and a M.D. degree from the University of Iowa Roy J. and
Lucille A. Carver College of Medicine in 1989. She remained at the University
of Iowa to complete an internship and residency in psychiatry and a fellowship
in neuropsychiatry. In
1993, she became a Fellow Associate at the University of Iowa Hospitals’
Department of Psychiatry, Assistant Professor in 1994, Associate Professor in
2000, and Professor in 2005. In 2001 she developed a program, the Iowa Medical
Student Research Program and continues to direct that program. In 2009 she was
awarded the Kate Daum Research Professorship. Dr.
Nopoulos’ clinical work focused on the care of patients with Schizophrenia and
other major mental illnesses for the first decade of her career. She then
turned her attention to the care of patients with Huntington’s Disease (HD). Since
2003, her primary clinical work has been working in the HD Center of Excellence
at the University of Iowa Hospitals and Clinics.
Dr.
Nopoulos is also an accomplished scientist. Her research focuses on
understanding brain and behavior, using state of the art brain imaging
techniques, specifically Magnetic Resonance Imaging (MRI). She is interested in
aspects of understanding normal healthy brain such as differences in brain
structure and function between the sexes as well as understanding how the brain
changes with development through adolescence. In regard to the study of
disease, her lab focuses on research into brain structure and function in three
main areas: prematurity, craniofacial disorders such as clefts of the lip
and/or palate, and Huntington’s Disease. Her work is supported by grants from
the NIH and she was recently awarded the Kate Daum Professorship in honor of
her excellence in academic medicine. As an indicator of the collaborative
nature of her work, she is currently a professor in Psychiatry, Pediatrics and
Neurology and she is an active faculty member of our Neuroscience Graduate
Program. H4HD:Dr. Nopoulos welcome to the show, how are you
tonight? Tell us how did you became interested in Huntington’s disease
research… especially in children? Let’s talk about this exciting new research
opportunity for children at risk for HD and JHD… PEG: Initially this
study was limited to evaluating children with no current symptoms of HD,
however we are now expanding the program to include ALL kids (6-18 years) who
are at risk – including those with symptoms but not yet diagnosed AND those
with already diagnosed JHD. We have the funds to pay for travel (often airfare)
to Iowa City; we also pay for hotel, meals, plus the kids get compensation
($100). The first day is a research protocol with cognitive, behavioral and
motor testing as well as MRI. If there is suspected JHD, the 2nd day
is a mutli-disciplinary clinical assessment with pediatric neurologist, a child
psychiatrist, and a pediatric psychologist.
H4HD:When did you decide to do brain imaging in
children? H4HD:How is the study going so far? H4HD:Are there advantages in working with children
and their families as opposed to just adults? H4HD:What biomarkers are you finding so far? H4HD:Do you provide any counseling to the parents
of these children? H4HD:How can our children and families participate
in this study?
PEG:Children and
families need to volunteer their time and consent to our assessments. I’ve
included a flier that we use to advertise for the study. We are trying to
spread the news and here is my contact information…
