"Live Well, Do Tell” Initiative 

This is a program, created by Acorda Therapeutics with input from a multi-disciplinary steering committee of Parkinson’s disease leaders and experts,  that encourages patients to be open and completely forthright in conversations with their doctors, so the doctors have a better idea of how to diagnose and treat.  Discussing symptoms frankly and in an open fashion is key. It is also intended “to generate a shared understanding, build awareness and develop an approach to bridge communication gaps among people with Parkinson’s, care partners, advocacy and healthcare professionals (HCPs) to inspire a movement for optimal conversations”

Clinical Trial Transportation

We are actively participating in the exercise study at Boston University, and there is room for more participants! Please contact me at sdkeepthefaith@gmail.com or (203) 415-1676 for more information.

Parkinson’s Foundation Seminar

Jersey City, May 4^th to 6^th

As a representative of the Parkinson’s Foundation, I participated in a roundtable and sat with junior researchers, where we explained to them – and helped them understand – the need for research protocols that accommodate the many unique needs of Parkinson’s patients.

Bastiaan R. Bloem, MD, Ph.D., spoke – and this is a very, very paraphrased summary – about the fact that patient evaluation by doctors is difficult, given the small amount of time that Docs have with them.  He mentioned that Doctors need more data using modern technology and that they need more face time, as well.

Visited MIT 

Met with Dr. Robert Langer and Dr. Ann Graybiel, at Dr. Langer’s office at Langer Labs in Cambridge. This was an honor for me to meet with these well-known and highly respected professionals.  I was joined by fellow CAP Board members Karl Hespeler and Kelly Kearney, as we discussed the potential for a working relationship to assist MIT in their Parkinson’s research.  We hope to have more details on this exciting development in the coming months.

Wellness Initiatives

Worked with a consultant on the very important task of trying to get exercise programs for Parkinson’s patients funded by insurance companies and also via Government programs.