Marlborough, Connecticut

November CAP Advocacy Efforts Update with Steve DeWitte November 2, 2017

Marlborough, Hartford County
November CAP Advocacy Efforts Update with Steve DeWitte, Marlborough, Connecticut

In September, I attended (and was part of Planning Committee) a four day program in Grand Rapids, Michigan.   I serve as an advisor to the Cure Parkinson’s Trust UK, who in conjunction with the VanAndel Institute, have hosted the “Grand Challenge” workshop for four consecutive years. 

There is much to share about this program, but in brief, the organizers hold firmly to the belief in the importance of collaboration of all stakeholders in the pursuit of disease modifying treatments for PD

During one segment, four Neurologists spoke to the question,

What do you look at as having the greatest promise in Parkinson Research

In no order, the replies included:

** Stem Cells & Gene Therapy have progressed to human trials.  In Australia, there are 18 individuals that are in Stem Cell Studies.  In the US, Gene therapy is now in human trials in two centers, after a successful proof of Concept study conducted by USF.

**Work spirited by funding provided mostly by the MJFF, strongly links alpha synuclein mutation to the cause of a good amount of symptoms. The theory is that these proteins can fold in the wrong way and spread that mistake from cell to cell  https://www.sciencedaily.com/releases/2017/04/170426183129.htm

Unclogging this protein has led to trials in Europe that are testing use of injections, and studying the ”GBA gene” in tandem with a medication to slow progression.

https://www.lysosomaltx.com/patients/

 



In July, I accepted an appointment to serve as a Patient Advisor to the Hartford Healthcare David Chase Movement Disorder Center.  The Center is led by Dr. A. de Marcaida and Dr. Duarte Machado in Vernon, CT.

I attended my first meeting on July 14th.

It is designed to integrate multiple medical disciplines that can be “Parkinson’s specific”. This includes PT, Imaging, Behavioral Physiological Testing, Psychiatry, and a 24-hour Heath Care Service Center.  It’s among the first Health Care organizations that has dedicated "brick and mortar” to this system of care in the US.  

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