It’s not yet September 2015 and everyone is gearing up to September 2016 and the 4th World Parkinson Congress (WPC) in Portland, Oregon. Two fellow “Parkies,” Jon Palfreman and Dave Iverson, are launching a must-see, free, downloadable podcast series: Portland Countdown. Beginning June 2nd, on the first Tuesday of every month they will interview a cross section of individuals about Parkinson’s. The aim of the series is to educate the community about this high-level, non-denominational conference which gathers the scientists, persons with Parkinson’s (PwP), and their families to share the very latest information about Parkinson’s, from day to day management to the very latest research into treatments. I met WPD Executive Director Elizabeth Pollar (“Eli”) at April’s Parkinson’s Unity Walk in Central Park and was so impressed with her “ya’all come” philosophy. With her work on the World Parkinson Congress (WPC), she unites the varied Parkinson disease factions—you go, Eli girl!
I’m excited just thinking about the potential for sharing information and, what Jon called in The New York Times article, “The Bright Side of Parkinson’s.” I hope to see all my old friends in Portland—AND, to make many new ones.
In the interim, I’ve been getting wonderful press coverage, the most recent, an article by Susan Livio in The Star-Ledger.
Just returned from Arizona (read: NO SNOW!) where I was Keynote speaker on Sunday. March 15th for the First Annual Optimism Summit and Expo. Sponsored by the Arizona chapter of the American Parkinson Disease Association at the Westward Look Resort and Spa, it brought hundreds of Parkinson Disease individuals and families together for a weekend full of events planned to educate, entertain and help families find ways to manage their day-to-day lives. I found a lot to learn myself and made some wonderful new friends—kudos to Executive Director Sarah Jones and her team for pulling together such an ambitious program in just a few short months. Arizona’s PD families are indeed lucky!
Please read my Jan 10, 2015 entry, “We get yet another clue from alpha-synuclein” in my Psychology Today blog, Neurogenetic Journey; A View From Both Sides of the White Coat: http://bit.ly/1w7QpUt
Please read my comments on Peg O’Connor’s blog about Robin Williams, Parkinson disease, and the “hijacking of the brain” by drugs on Psychology Today: http://bit.ly/1xxyjQf
Once again “our” alpha-synuclein (SNCA)—the protein that my team linked to Parkinson’s back in the ’90’s—is in the forefront of potential treatment approaches! A team at UCLA has reported improvement of PD-like symptoms in a mouse model (mice that over-produce SNCA and demonstrate Parkinson disease-like symptoms) with a drug being studied to treat a rare genetic disorder, Gaucher disease.
Gaucher disease occurs when two carrier-parents pass on a gene which prevents the body from producing an essential enzyme, glucocerebrosidase (GCase). In 2011, a team at Massachusetts General Hospital described the interaction of Gauchers and Parkinson’s in the same pathway: disruption of the GCase pathway results in SNCA deposits and as SNCA levels rise, the Gaucher’s associated pathway is inhibited. This suggested that medications used for one might benefit the other.
The drug, AT2101, is a “chaperone” drug which helps guide malfunctioning enzymes to where they need to function. In the mice that over-express SNCA, (as in PD patients) the drug improved motor function, stopped brain inflammation, and reduced SNCA, suggesting its potential effectiveness for treating Parkinson’s.
Keep the faith.