Happy New Year!

My advocacy travels have slowed considerably during the year-end and January, but I am pleased to have been able to recently attend the hilarious – and touching – off-Broadway play, “Side Effects May Include…”, written by Seinfeld writer Marc Jaffe and Broadway playwright Eric Coble, and starring Nick Koesters. A wonderful dinner was enjoyed with my PWP friends from Fairfield county prior to the play – and a good time was had by all.  Here I am shown with Karen Jaffe, Michelle Hespeler, and Marc Jaffe, after the play.

I am thrilled to be a participant in the Parkinson’s Progression Markers Initiative, with Dr. David Russell from INDD in New Haven. “PPMI is a landmark observational clinical study that aims to identify biomarkers of Parkinson’s disease (PD) progression by assessing multiple cohorts to develop the largest collection of clinical, imaging and biologic specimens ever created in the Parkinson’s community. PPMI data and specimens are made accessible through this Web site to academic and industry researchers to perform verification studies of PD biomarkers”.

At the time of this writing, our government is still in a “partial shutdown” status.  While it may not be apparent, this is negatively affecting PWP’s due to the fact the FDA is unable to process funding from industry sources, which will rapidly bring to a stop many of the critical FDA related activities.  I hope and pray that this situation is resolved asap.

Lastly, you’ve provided me oral submissions, and have done a superior job of making excellent interpretation of my desired message.
I would add to “ADVOCACY content:

I’d like to extend compliments and appreciation to Joe Kelley, State Advocate Liaison, for his outreach to our new 5th District Representative, Jahana Hayes.
There is great optimism that she will be a great supporter of our cause, once oriented to our views.  To members living in 5th District, please congratulate and welcome her warmly.

I have recently enrolled in a clinical trial in NYC Columbia Medical Center, related to blood work that identified me as a “GBA Gene” carrier.   I will be receiving medication (or placebo) at my next visit this month.    This follows a grueling two day trial in Seattle related to this recently targeted Gene.  I commend my fellow PWP who have enrolled in studies (most notably PPMI @ INDD in New Haven)
We’re in this together.  Thank you all.

There are some great speakers coming to our Support groups this month.  Dr. Tinaz Sule from Yale and Dr. Sarah Buckingham (Stamford, CT) will share the latest in the Clinics & the Labs.  Please attend these meets as a show of support for the speakers and Program Leaders.