Specialty Pharmacies, Grand Challenges in Parkinson’s, Victory Summit Philadelphia, Day on the Hill Washington D.C.

Regarding specialty/online pharmacies, as a patient, first and foremost, I stress to all involved that the concept is a good one: keep pharmacy costs down for the patient.  But of course, the devil is in the details.  Many wonderful ideas fail upon implementation, and I caution major healthcare organizations to be diligent about measuring PATIENT satisfaction for initiatives like this.  With the often-unwieldy labyrinth to get our meds actually delivered, and my own personal experience of grand promises that end up being less than grand in the outcomes, measurement of the effectiveness of these vendors is critical to the patient experience – and ultimately saving the patient money.  We can’t use these services if they are too complex or have too many hoops to jump through.

On August 21 and 22nd, I will be in Grand Rapids, Michigan once again for the “Grand Challenges in Parkinson’s” at the Van Andel Research Institute.  This is an annual event for me, and I look forward to reconnecting with many in the PD community once again.  “Grand Challenges in Parkinson’s Disease brings together hundreds of scientists, clinicians and people with Parkinson’s to explore the latest Parkinson’s disease research. The theme for 2019 is Understanding Genetic Risk, which will focus on the genetic components that contribute to disease onset and progression, with an eye toward advances that may lead to new predictive measures and disease-modifying therapies.

Van Andel Research Institute and The Cure Parkinson’s Trust are thrilled to once again host Rallying to the Challenge, a meeting designed for and by people with Parkinson’s, advocates and care partners that delves into how the Parkinson’s community can impact and accelerate research.”

I then fly to Philadelphia for the Davis Phinney Victory Summit, which “is a moving day of information and inspiration, featuring dynamic presentations from leading movement disorder neurologists and therapists from across the country. It’s an upbeat, fast-paced event of community and connection, filled with laughter and conversation. You will leave (the) event feeling motivated and armed with tools to help you be more involved in your own treatment and to improve your quality of life.”  Learn More Here

Finally, on September 8 and 9 I will be in Washington, D.C. for the annual “Day on the Hill” where we meet with legislators to strengthen our ties and lobby for our cause.  I’m usually joined by CAP’s Sarah Diaz and Joe Kelley for this important series of meetings.