10/06/2026
This week, the International Parkinson and Movement Disorder Society is holding their in Seoul.
It's a gathering that brings together folks from all over the world, with a wonderfully full agenda of science, research, debate, discussion, and forward thinking.
Make no mistake: this group is impactful. They are the best and brightest, collaborating with one another to share, learn, and move the needle in all things movement-disorders related.
We are told by our colleague, Esther Labib-Kiyarash, that the patient voice could be better represented in Seoul.
Continuous improvement suggestion 1 to International Parkinson and Movement Disorder Society: set aside travel grants for patients/advocates. If you have them - do a better job of letting the folks in that category know. Incorporating those voices into your program can add valuable perspective.
Continuous improvement suggestion 2: take on the challenges that your International Parkinson and Movement Disorder Society colleagues have identified as needing improvement. Your colleagues were surveyed by MDS-PAS, and they spoke. Clearly. Definitively.
in fact, here's an open letter, shared yesterday with
You told us what is broken in trial recruitment. Help fix it.
An open letter to colleagues at the MDS Congress in Seoul
10/6/2026
Last summer, MDS-PAS and CureNow:PD surveyed MDS-PAS clinicians and researchers about clinical trial recruitment in Parkinson's disease.
Ninety-eight responded. The results are actually on a poster this week in Seoul. We’re grateful to MDS-PAS for their efforts in collecting the data.
Now, we’re challenging you to do something in response.
What your colleagues said about recruitment:
• Only 1 in 5 believe that more than three-quarters of Parkinson's trials meet their recruitment goals.
• 58% say investigators do not have enough time to recruit effectively.
• 53% say trials are not given adequate recruitment budgets.
• 89% say recruitment would benefit from a better-defined process built on proven approaches.
• 99% say recruitment would benefit from a more personal, hands-on approach.
These are not an advocacy group's opinions. They are the views of the people who do the recruiting.
Innovate.. or hand this off?
Steve DeWitte and Michelle Morianos Hespeler co-founded CureNow:PD. Each was diagnosed with young-onset Parkinson's twenty years ago, and each has spent those years encouraging people to join clinical trials.
They are not asking for more trials. They are asking that the trials that are designed find the participants they need.
Better targets and biomarkers will make trials better. They will also narrow who qualifies, which makes the right participants harder to find. Better science needs better recruitment, not less of it.
Patient organizations can raise awareness. Only investigators and clinicians can fix site readiness, investigator time, recruitment budgets and metrics.
That expertise is in MDS – many in Seoul – this week.
MDS: LEAD the way
We are renewing our ask of MDS to lead a multi-disciplinary group on clinical trial recruitment, beginning in the Pan American Section, where the survey was run.
It needs the Society's standing, expertise, resources – and most of all, leadership. It is yours to lead, not ours.
It is not a fit for Parkinson & Movement Disorder Alliance. It is a fit for MDS. To drive change. To improve.
What you can do this week:
It takes one conversation.
1. Talk about these findings with your colleagues this week.
2. Tell MDS leadership that you want MDS to lead this. One sentence in the hallway or by email is enough.
3. Do this for people like Steve and Michelle – and to deliver on a key goal of IMDS: to "Us(e)the Society’s influence and resources to enhance support for research." - International Parkinson and Movement Disorder Society - your words. Your focus.
Please lead.
Thank you for driving positive change.
Beat Parkinson's Today
CureNowPD
Michelle Morianos Hespeler
Geoff Woolery
Karl Hespeler
Scott McCarthy
