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PPMI Participants Share Perspectives on Landmark Biomarker Study

PPMI Participants Share Perspectives on Landmark Biomarker Study

In late spring, investigators from the Parkinson's Progression Markers Initiative (PPMI) -- a large-scale, longitudinal study sponsored by The Michael J. Fox Foundation to identify biological markers of Parkinson's disease -- gathered in New York City for their annual meeting. Also in attendance were a handful of PPMI participants.

These research volunteers penned a letter to the PPMI community sharing their gratitude to the many people involved in this initiative and their perspective on the impact of the study. Learn more about PPMI.

Dear PPMI Community,

A heartfelt thanks to all of the investigators and those at The Michael J Fox Foundation for all your behind-the-scenes efforts in this massive biomarker initiative. This is my second year attending the PPMI investigator update, and I left the two-day meeting both proud and impressed to be part of these ongoing efforts.

Initiatives of this magnitude do not occur without a catalyzing groundswell of coordinated effort. Every single attendee at the conference center has added value to PPMI through their contributions. So has every patient and non-patient who has enrolled and provided data and biologic samples. The spirit of collaboration was palpable.

As a lifelong biotech executive, I have seen the power of genetics and big data analysis in advancing our understanding of non-neuro diseases such as cancer and cardiovascular disease. As a person living with PD today, I can see that we are at this same cusp of transformation in neurodegenerative diseases. We predict this will be truly game-changing to the lives of future tribe members.

Those in our community who aren't watching PPMI regularly may not appreciate how this evolved and the complexity of that evolution. There is logic that runs through the initial vision of PPMI, the cohort expansion to prodromal and people at genetic risk, the follow-up extension and now the pathology initiative.

Just as the Framingham Heart Study has changed the way of cardiovascular disease and treatment, PPMI will have the possibilities of a similar impact in Parkinson's and beyond.

Thanks to all of you for welcoming us patients at this meeting, and, more importantly, thanks for everyone's efforts. The tip of this iceberg is just starting to peek through the surface, and much more is to come.

For this, we are just so grateful.

D. Kevin Kwok, PharmD
Patient Research Advocate and PD Tribe member
San Francisco, CA

Peter Burne
Branford, CT

Jean Burns
Sun Lakes, AZ

Linda
Anchorage, Alaska

Interested in participating? PPMI is recruiting people of Ashkenazi Jewish, Basque and North African Berber descent with Parkinson's or with a first-degree relative with Parkinson's disease. If you think you may be eligible, take our screening survey.

Register with Fox Trial Finder or make sure your profile is up to date to be matched with other studies looking for volunteers.

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