Potential diagnostic test proposed

An immunoassay for a phosphorylated alpha-synuclein in blood plasma has been developed as a potential (repeat potential!) diagnostic for Parkinson's. This is an important but preliminary report, and is not surprising given our rapidly expanding knowledge of the life cycle of this protein. Multiplexed assays of other variants, forms, and regulators could be powerful here. [4 Dec 2011]

Walking the Talk- Fox Foundation shoes in $9.4 million

The Fox Foundation raised $4.7 million generated by the 10-day eBay auction of 1,500 pairs of limited edition 2011 NIKE MAG shoes. Through the Brin Wojcicki Challenge matching grant, effective through 2012, the proceeds of the auctions will be doubled — bringing the total funds generated to $9.4 million. The funds will go straight to the Foundation’s aggressive research programs to help speed a cure for Parkinson’s disease. [12 Nov 2011]

Caring for a Person with Late Stage Parkinson's webcast

What can you expect as Parkinson’s progresses to its advanced stages? How can you and your loved one living with Parkinson’s prepare for the challenges it presents? Find out by joining this one-hour online ExpertBriefing seminar. Joan Gardner, R.N., B.S.N., and Rose Wichmann, P.T., of the Struthers Parkinson's Center in Minneapolis, MN will discuss strategies for promoting the safety, dignity and quality of life for those with advanced Parkinson's.

"Caring for a Person with Late Stage Parkinson's" on Tuesday, Nov. 22, 2011, at 1:00 EST (or 10:00 AM PST) through the Parkinson's Disease Foundation. You may sign up at http://www.pdf.org/parkinson_briefing_caring_late_stage/?utm_source=newsletter&utm_medium=email&utm_campaign=general. [12 Nov 2011]

23&Me GWAS spots new PD-associated genome sites

Paydirt from 23&Me GWAS project - 2 new DNA sites are added to 20 previously known PD genes. Estimate that at least 27% of PD story is genetic, i.e. dozens more loci play a role in disease. The effort to collect second half of 10,000 samples originally targeted is renewed. 50,000 people in USA are diagnosed with PD each year; California by itself should be able to fill out this study! Please step up and spit. [24 Jun 2011]

Fox Foundation to support "Trial Finder" Service

The Michael J Fox Foundation has achieved great success orienting scientists to move their laboratory results towards patients in clinic, but this has created a huge demand for people to serve as subjects in FDA-sanctioned (Phase II and III) clinical trials. The new social media service will link volunteers to local study centers more efficiently than the current PDTrials website to help speed up the transition and approval process. [30 Apr 2011]

New Route for GDNF delivery proposed

Eli Lilly (a supplier of protein-based drugs) and Medtronic (a medical device specialist known for DBS) have announced a partnership to develop an implantable delivery package for GDNF directly to the brain. GDNF as a PD therapeutic was examined by AMGEN, followed by gene therapy now in trials by Ceregene. This new approach is another strategy to place GDNF protein precisely where it may help the most. [30 Apr 2011]

Stem Cells and Neurodegenerative Diseases Update 7 May 2011

The University of California-Irvine and the California Institute for Regenerative Medicine will offer a 1-day discussion of the latest developments in treating a spectrum of neurological disorders and the role stem cells may play in these efforts. Patient advocates and clinicians from research centers across the state will speak. [30 Apr 2011]

CPG Picnic 30 July 11- Save the date!

The popular Annual Picnic is planned for 30 July, at a new venue, Lake Mission Viejo! Watch your email for the details.[30 Apr 2011]

Physical Therapy vs. Physical Wellness

Exercise, exercise, exercise- PWP have learned this mantra, and a new study from U Md suggests even low activity levels are beneficial. My quarrel with Physical Therapy is that it is set up to rehabilitate injured people, and does not therefore deal well with chronic illness. Maintain and conserve the wellness that you have left through any physical challenge you like, be it marathons, dancing, singing, or conducting - any exertion with rhythm or cadence.

APRIL IS PARKINSON'S AWARENESS MONTH! [13 Apr 2011]

TSA eases Air Travel a bit

Commercial air travel is a daunting proposition for People with Parkinson's. Homeland Security has made flight boarding a little less so by adjusting procedures for carry-on prescription meds and shoe inspection, and by issuing a handicap ID card to alert TSA staff to special needs. Download a template from their website. [13 Mar 2011]

Stem cell cultures from PD patient show biochemical symptoms

Neurons have been derived from cultured iPS cells of a woman with a genetic form of Parkinson’s disease that show some of the molecular-level symptoms of PD, i.e. response to oxidative stress. These cultures could be used to test the effect of redox potential and other agents on PD. See Forum, Bio-Research. [8 Mar 2011]

Call for a National Registry

Senator Mark Udall (D-CO) will reopen the campaign for passage of the National Neurological Diseases Surveillance Act in the US Congress this week. The Act calls for (among other things) a National PD Registry, which will answer the simplest questions - e.g. How many citizens have Parkinson's? - for which we now have only estimates at the state and national levels. If enacted, the CDC will provide a foundation for building the epidemiology of PD, and for finding volunteers for clinical trials. (See 12 Dec and 29 Nov 10 posts) [28 Feb 11]

PAN pushes for People with Parkinson's this week

Tomorrow, Monday 28 Feb 11, PAN (the national lobbying team for PWP) begins their annual 3-day effort to educate Congress about PD. From this coast, it is important that we participate in the 3-hour Forum which will be webcast from 10am to 1pm. To register and see the Agenda for the free webcast, go to http://www.thepanforum.org/webcastagenda.htm The Federal government touches PWP every day via the NIH, CDC, VA, and SSA. Let the Congress know that we are out here, counting on their support. [27 Feb 2011]

Please don't say "Pesticide"

The link between pesticide exposure and PD is widely discussed and genuinely feared. However IMO, a distinction needs to be made between herbicides and insecticides. Both capitalize on differences between the biology of humans and that of plants or insects, but the two "pest" targets are worlds apart. The insecticide suspects are often neuro-toxins, and a link to PD is natural. Herbicides disrupt the biochemistry of plant hormones and basic metabolism, and so do not have an inherent effect on people. Lumping the two together under the judgmental pesticide umbrella only obscures research direction. [19 Feb 2011]

iPhone detects PD tremor - an app for that... Next?

The accelerometer built into the iPhone3 was used by researchers to record hand movements of a PD patient; the data were emailed to a remote site. The iPhone4 has a gyroscope in addition. These two devices combined have already been shown to accurately detect persons falling. Automatic fall detection and wireless reporting are just around the corner. [12 Feb 2011]

Feb 2011 CPG meeting to be Super Bowl party/benefit

And now, for something completely different - the "Generation Give" Foundation (www.gen-give.org) is hosting a Super Bowl celebration for, and partly for the benefit of, the California Parkinson's Group. Please see their website for the details! This event on 6 Feb in Mission Viejo will serve as the CPG monthly meeting. The CPG email distribution should have received an invite/message from our Foundation yesterday. [17 Jan 2011]

People with Parkinson's need to Help

A Cure for Parkinson's may already lie in some researcher's lab notebook, but it will take hundreds if not thousands of Parkinson's patients stepping forward to participate in Clinical Trials to prove it. Potential therapies have moved into the development pipeline at accelerating rates, and this has created a huge deficit in the human resource of affected volunteers. Studies range from intervention to observation, and the Fox Foundation lists 5 types with increasing benefit and risk. It is incumbent on the research community to prioritize these candidates and to keep patient safety foremost. The patient community has the responsibility of putting their bodies and already compromised health on the line to fulfill these trials. The meds you have today are available only because earlier patients proved them out; new therapies will only come if we continue to build that legacy. [12 Dec 2010]

P.S. "Love and Other Drugs" Movie Review

For another review of "Love and Other Drugs" see http://www.thereporteronline.net/atf.php?sid=22856¤t_edition=2010-12-02

US House votes to create/expand National Neuro-Degeneration Registry

Just before the recent midterm Congressional election, the US House of Representatives passed a bill (H.R. 1362/S. 1273) that creates a national registry of people with neuro-degenerative diseases at the Center for Disease Control and Prevention in Atlanta. The upgraded bill explicitly provides access to Social Security Administration and Veterans' Affairs records - a huge step forward for identifying and characterizing the Parkinson's population (with HIPPA). Matched with GWAS genetic data and environmental overlays, this authority can answer the Who and Why questions about this disease. Next step - Senate passage, possibly by year-end. Funding in the legislation is set at $5 million each year from 2012 to 2016. [29 Nov 2010]

Michael J Fox uses dyskinesia on network TV show

Hopefully, you caught the recent episode of "The Good Wife" on ABC wherein Mr. Fox played a dyskinetic attorney representing a drug firm in a class action suit. He used his medical condition as a courtroom weapon to distract the jury - and the defense - in a cleverly written show with a final plot twist that snatches victory for Fox's character from the jaws of Alicia Florrick and Lockhart, Gardner and Bond. This episode is on-line. [19 Nov 2010]

Fresh Advocates unleashed on PD

Forty people living with Parkinson’s disease (PD) recently became the newest members of a research advocacy network led by the Parkinson’s Disease Foundation (PDF). Last week in New Jersey, the group completed a three-day training program, the Third Annual PDF Clinical Research Learning Institute, which has prepared them to advocate for the inclusion of people with Parkinson’s in therapy development. See PDF website for press release. [29 Oct 2010]

Major YOPD-centered movie in theaters 24 Nov

We just heard about the movie, "Love and Other Drugs", a romantic comedy from 20th Century Fox/Regency that revolves around Young-Onset PD. Anne Hathaway and Jake Gyllenhaal co-star. The picture comes out this Wednesday, Nov. 24th. Shot on location in Pittsburgh, the producer used members of a western Pennsylvania young-onset PD support group (instead of actors playing YOPD patients) in the movie.

Below are some links to some reviews/commentary/trailers:

http://www.imdb.com/title/tt0758752/videogallery

http://www.post-gazette.com/pg/10272/1091004-114.stm

http://www.reelartsy.com/2010/11/afi-fest-review-love-other-drugs.html
[19 Nov 10]

Our Website and Others

The CPG website is starting a make-over to adjust to the Web's continuing evolution. Please use our Facebook page for local communications and news items. I recommend the Fox Foundation website, and its two spin-offs, the PD Research On-line and Parkinson's Progression Marker Initiative sites for tracking the latest research. For advocacy training and tools, contact the Parkinson's Disease Foundation.

CPG v2.0 has fulfilled its mission of establishing our support network in Southern California; I look forward to CPG 3.0 enabling a richer, deeper texture, a simpler, accessible design and a streamlined, regional focus. [14 Sep 2010]

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]