Wednesday, March 20, 2013

The HD View Ask Dr. Goodman Show


Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, June 4, 2012

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.
Read her article: Supplements and HD: Where are we?

Read more at www.hddrugworks.org
Welcome back to The HD View Dr. Goodman! We are honored that you keep coming back every month.

H4HD:  So, what is a supplement?
H4HD:  Let’s talk about the supplements you have outlined in your article:
  • Coenzyme Q-10
  • Creatine
  • Trehalose
  • EGCG
  • Cannabinoids
  • Nicotinomide
  • Melatonin
  • Selenium
  • Vitamin E
  • Vitamin C
  • Resveratrol
H4HD:  Why are you more skeptical about mouse model results?

H4HD:  Let’s talk about supplemental doses

Antioxidants
  • Co Q-10
  • Creatine
  • Trehalose
H4HD:  Why are more people using supplements today?
H4HD:  Why is healthy lifestyle so important, again?

QUESTIONS:

Tuesday, March 19, 2013

Help 4 HD News Update with Dr. Stuart Blatt


Listen to internet radio with HD Support Groups on Blog Talk Radio

Tuesday, May 29, 2012

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:
  1. What brought you to the field of adult learning and treating persons with neurological challenges?
  2. How did you start Therapists on the Move, mobile outpatient clinic?
  3. Tell us about ASCEND and how this organization was formed…
  4. What kind of speaking engagements have you been doing lately?
  5. What are you teaching at the Physical Therapy Department at the University of Michigan-Flint?
  6. What have you learned about exercise and Huntington’s disease?
  7. How can we get our H’Dears motivated to exercise?
  8. Tell us about the HD Camp…
  9. What is your philosophy about advocacy programs for people suffering with HD?

The HD View with Steven Finkbeiner, MD, PhD


Listen to internet radio with HD Support Groups on Blog Talk Radio


Monday, May 21, 2012

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?

The HD View with Jimmy Pollard


Listen to internet radio with HD Support Groups on Blog Talk Radio

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…
  • H4HD:  Are you writing any books or guides?
  • H4HD:  What are you doing for fun? (LCK)
  • H4HD:  Will you come back on the show again soon?

Sunday, March 17, 2013

The HD View Ask Dr. Goodman Show


Listen to internet radio with HD Support Groups on Blog Talk Radio

 
MONDAY, May 7, 2012
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?

The HD View with Dr. Michael Geschwind


Listen to internet radio with HD Support Groups on Blog Talk Radio

MONDAY, April 30, 2012
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?

The JHD View with Dr. Peg Nopoulos


Listen to internet radio with HD Support Groups on Blog Talk Radio


Monday, April 23, 2012
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…
Peg Nopoulos, M.D.
Phone: 319-384-9264
Email: peggy-nopoulos@uiowa.edu
Study Email: kids-hd@uiowa.edu
Toll-free Phone: 866-514-0858