Placebo effect in PD Clinical Trials defined

People with PD show a well-known placebo effect in clinical trials. Using PET scans, a new study indicates that this is a physiological, biochemical response to the _expectation_ of a therapeutic benefit. Four groups of subjects were told that they had a 25%, 50%, 75%, or 100% chance they would receive levodopa/carbidopa vs. placebo; in fact, all received placebo. The 75% group had a dopamine release in the areas of the brain typically involved in PD. [4 Aug 2010]

Sergey Brin profiled in Wired magazine

In the July 2010 issue, this article describes very clearly how Brin is working to drive the genetic analysis for PD via the company 23and Me. The co-founder of Google believes that the association algorithms they developed will have traction in the analysis of symptoms and genes. The program has enrolled nearly 5000 people with a target of 10,000. [4 Aug 2010]

CPG Meetings Ahead

The June and July Monthly meetings have been rolled back into the Annual Picnic for all CPG family and friends, which will be on July 17th. Please watch for details and RSVP by eVite.

Unity Walk webcast on NOW

Live from New York Central Park, webcast repeated tomorrow. Inspiring! [24 April 2010]
(FYI the WHO declared 11 April 2010 World Parkinson's Day.)

Biomarker Search launched by Fox Foundation

The Michael J Fox Foundation will fund a 5-yr, $40 million survey of 400 newly-diagnosed Parkinson's people and 200 healthy controls. Patients in this program will be tracked on several levels ranging from metabolite to protein to brain imaging to behavioral metrics. Several types of samples will also be collected and banked. This is a major effort to find the tools needed to show the disease is present, and then and only then, that it is cured or prevented.

IMO- Just as one gene does not control Parkinson's, one biomarker will not solve the problem. We will need a battery of tests and algorithms that link their results into the clinical presentation. There will be a number of different levels or dimensions in the panel, and multiplexing assays such as bead-based immunoassays will be critical. Engineering the panel will be a key to commercialization, just as automated fall detection and remote monitoring/reporting are being designed today. JRW [22 April 2010]

Health games for PD on Wii move into Phase 2

A collaboration between the UCSF School of Nursing and Red Hill Studios of San Rafael, California developed an exercise program for PWP on the Wii-Fit game platform. The team recently won a million dollar NIH grant to move into Phase 2, which will extend the training program and add a telemetry link to your clinic so that your therapist can direct and monitor your in-home efforts. [17 April 2010]

Bicyclist with Parkinson's rolls on

People with advanced Parkinson's are usually stiff and immobile. Many instances of such individuals moving quickly in an emergency are documented. The recent case of a stricken man in the Netherlands who can still ride his bike fluidly has drawn much press coverage, but little insight. An in-depth interview with the man's neurologist that is on the main Fox Foundation website provides the context for this behavior. [8 April 2010]

April 2010 is Parkinson's Awareness Month

April 2010 is Parkinson's Awareness Month. The Parkinson's Unity Walk in Central Park, New York City on Saturday, the 24th can be seen via webcast. Go out and educate someone about your Parkinson's condition. [8 April 2010]

A common basis for Alzheimers, Parkinsons & Huntingtons!

The phospho-protein ELK-1 was found to be toxic to neurons, and to be present in the protein tangles from human brain tissue in all three major neuro-degenerative diseases (work at the Univ. of PA). This is a hot lead to researchers because ELK-1 is in a family of gene expression controls, so its primary role could be a key to the fundamental biology of neurons. Since only the modified form seems to be toxic in three diseases, it increases the chances that this is purposeful or causative, rather than coincidentally trapped on the protein trash pile. IMO. [4 Feb 10]

Review of PD Medicare patient epidemiology

A review by Willis et al. of 450,000 Medicare records per year analyzed 98% of the US population over age 65 for incidence and prevalence of Parkinson's. Previous smaller studies provide confusing results, so this county-by-county view across the US presents a new, authoritative perspective. As reported in Neuroepidemiology, a "hot zone" covered the industrial Northeast and Midwest, and pesticide usage did NOT match the disease pattern. (People move!) Results were also filtered by sex, race, and age. The authors acknowledge that YOPD is excluded from the analysis. This is a landmark study of normal-onset PD, but regional detail and additional patient history data would add some color to this framework. IMO [4 Feb 2010]

YOPD 2nd Regional Conference to be in California

The second YOPD regional conference will be in Sacramento, California on 12-13 March 2010. This follows the first meeting in Texas last Fall. There will be five meetings total. This is the first time NPF and APDA have collaborated.

The link should appear on the next line;
http://www.youngparkinsons.org/userfiles/Conference.bmp

Dr. Anne B. Young lectures at UC Irvine, Jan 12.

Professor Anne B. Young, MD, PhD, will speak on "Moving Ahead with Parkinson's Disease Research".

With an endowed Chair in Neurology at Harvard Medical School and as Chief of the Neurology Service at MassGeneral Hospital, Dr. Young has unique and distinguished experience in applying scientific results in the clinic, now fashionably called Translational Medicine, in the field of neuroscience.

The lecture is on Tuesday, 12 January 2010 from 7 to 9pm at the Crystal Cove Auditorium in the Student Center on the UC Irvine campus. The public is cordially invited to attend. This event is supported by the California Parkinson's Group Foundation. Details are posted in the Forum. [6 Jan 2010]

Clinical Research Learning Institute from PDF

Back in October 2009, I was selected to attend a three-day advocacy training specifically for People with Parkinson's. The "Clinical Research Learning Institute" (CRLI) is a unique enterprise developed and run by the Parkinson's Disease Foundation as an innovative addition to their extensive PD education program. The mission of the graduates is to help break the bottleneck of new therapy development, which is enrolling patients in clinical trials. An informative interview of one of the lecturers and another participant can be found in the PDF quarterly newsletter for Winter 2010, pp. 6-7, available on their website. As MJ Fox has amply demonstrated, we can and will be our own best advocates.

How to support the CPG Foundation

In this season of giving, people have asked how to donate to the Foundation. To make this easy, a button has been placed on the Main Menu (left column) of this homepage that goes immediately to the required information (posted in the Forum).

Every dollar donated benefits YOPD families directly via our meetings, educational lectures, advocacy of and participation in clinical trials, and our website, which was visited by thousands of people in more than 50 countries in 2009. We have also started Caregivers' Support, and Daytime Activities sub-Groups, and promoted the work of 23andMe, The Fox Foundation, PDtrials, and the California State Parkinson's Disease Registry.

One of our founding principles is that CPG members receive these benefits at no cost. Donations are purely voluntary, can be anonymous and are tax-deductible. A mailing address is required for us to send an acknowledgment letter back to each donor. [17 Dec 2009]

Save these Dates for CPG Events- Update 5 Dec

1 Dec 09 - Monthly Meeting; Dr. Devin Binder on DBS
11 Dec 09- Holiday party at Member's home. See evite of 3 Dec!
(5 Jan 2010 - No Monthly Meeting - Happy New Year!)
12 Jan 10 - Special Evening Presentation - Dr. Anne B. Young, on the UCI campus
30 Jan 10 - Annual CPG Dinner (reset from 14 Nov.) Dr. Carl Cotman on Exercise
2 Feb 10 - Monthly Meeting; Dr. Neal Hermanowicz - Ask the MDS

Details will be emailed or posted as they become available. Watch Calendar or Forum, Public or CPG sections. [14 Nov/5 Dec 2009]

WE FAILED

The Governing Board (ICOC) of the California Institute of Regenerative Medicine awarded $250 Million of Prop 71 stem cell money this week to 14 Disease Team Research programs- and Parkinson's did not get a penny. This grant program is meant to speed research up into clinical trials, and researchers in 11 diseases put together acceptable applications. We, the Parkinson's community of scientists, clinicians, and patients, FAILED to do the same. From the entire state, one Parkinson's proposal was submitted, but peer reviewers rated it below the funding cut-off, and the ICOC, in a roll call vote, supported that decision, even though three other cases also seeking special appeal (one of them ranked BELOW the Parkinson's proposal) were lifted above the funding line. This is a serious failure for which we, the ca. 180,000 Californians with Parkinson's, will pay dearly. It is a failure of our entire community, CIRM and the ICOC included. IMO. JW [30 Oct 2009]

Spouses' Support Group meets 7 Nov 09

Dr. Joanne Hamilton will be our guest speaker at the CPG spouses' support group on Sat. Nov. 7th at 2 PM. She will be speaking/answering questions about "Managing Behavioral Changes in Parkinson's Disease". If you are interested (and are not already on the mailing list), please call Susan at 714-343-1623 for more information. [24 Oct 09]

CPG Dinner POSTPONED from 14 Nov 2009

With apologies, the Board has postponed this dinner until early next year due to the unexpected, necessary absence of our key adviser on the 14th. The re-scheduling target is January, 2010; details again here and by eVite.

WE WILL HAVE OUR REGULAR FIRST TUESDAY (3 NOV) CPG MEETING, to discuss some new activities for the Group. Again, apologies for the late change. JW [28 Oct 2009]

ADAGIO study favors Azilect

The ability of rasagiline (Azilect) to slow the progress of Parkinson's was demonstrated in a recently completed study. The clinical trial successfully met five out of six criteria in the ADAGIO study of 1000+ subjects. The dose-dependence did not conform to expectations, leaving neurologists with some questions about how the drug is acting. [27 Sep 2009]

Cell-to-cell passage of a-synuclein observed

The hand-off of a brain protein from neuron to neuron that may underlie Parkinson's unpredictable progression has been documented by UCSD researchers. Alpha-synuclein- mis-folded (or mutant?) is released from damaged neurons, then taken in by neighboring cells, propagating the protein clog that flags these cells for self-destruction. If brain damage starts in different sites and directions, this could explain the varied symptoms and rates that customize each person's PD. This transmissible feature is found in other, more virulent neurodegenerative diseases like Creutzfeldt-Jacob and BSE or Mad Cow disease. Alpha-synuclein as prion? In the galaxy of protein motifs and foldings, the likelihood of a thermodynamically stable, self-propagating, and "toxic" conformation is high, perhaps inevitable. New paths to therapies open, IMO. [29 Jul 2009]

Gene therapy trials optimistic

Oxford Biomedica, a UK company, revealed positive results in early trials for ProSavin®, which is described as a "novel gene-based therapeutic for the treatment of Parkinson's disease. The product is administered directly to the striatum in the brain. It delivers three genes required to convert cells that normally do not produce dopamine into cells that do, thereby replacing the dopamine synthesising cells lost during the course of the disease. ProSavin utilises Oxford BioMedica’s proprietary LentiVector® system to deliver the genes AADC (aromatic amino acid decarboxylase), TH (tyrosine hydroxylase) and CH1 (GTP-cyclohydrolase 1). These genes reprogramme transduced cells to manufacture and secrete dopamine." [21 Jul 2009]

CPG Spouses/Partners/Caregivers Start-up Support Meeting

Several spouses of people with Parkinsons in the CPG are organizing a support sub-group for spouses/partners/caregivers. A meeting is planned for Sat. July 25 around lunch time. If anyone is interested in this newly forming group and/or attending the meeting on July 25, please contact Susan (log in to Forum, Local News and Events for details). This July 25th meeting will be for spouses/partners/caregivers only, please. [17 Jul 2009]

The Patch is back.... in Europe

The Neupro transdermal rotigotine patch has been re-released in the EC. Storage problems triggered a recall, but improved conditions now permit distribution. See Forum, Medications. [8 Jul 2009]

CPG Promotes Genetic Study

The California Parkinson's Group and Foundation have allied with the 23andMe Parkinson's genotyping project. To facilitate enrolling, we have arranged with 23andMe for a single discount code to cover the CPG and other Parkinson's patients of the Movement Disorders Clinic at UC Irvine. Our code is limited in number, geography and time, so don't wait to contact me if you want the code. CPG people who replied to me earlier should have received the code by email. [27 Jun 2009]

Come into the new Lab at the Fox Foundation

The MJFF has opened a new website which is a virtual PD basic and clinical research lab. THIS IS A FANTASTIC RESOURCE! See it at or via the MJFF homepage. Once again, the MJFF has cut to the chase and come up with a new tool, here a new way of communicating for scientists. It feels like you're in a giant research lab, talking to other PIs and lab managers about what they are doing and thinking of doing next. The expertise is cutting edge, the coverage is broad and the content is publication-quality. Participants are signing up in droves, and the site has just gone on line for viewing by the general public. [4 Jun 2009]