With the first meeting of the Advisory Council on Parkinson’s Research, Care, and Services set to debut tomorrow, four of the country’s largest Parkinson’s advocacy groups are speaking as with one voice: move fast, stay transparent, and never lose sight of the patients, their families, and caregivers this work is meant to serve.
The American Parkinson Disease Association, The Michael J. Fox Foundation, the Parkinson’s Foundation, and CurePSP each submitted public comment letters to the council ahead of its June 29 inaugural meeting. Though written separately, the letters landed on many of the same talking points, a sign of how these priorities are important across the Parkinson’s community.
Chief among them is urgency. The organizations want the council to meet its one-year deadline for delivering the first National Parkinson’s Project report, and they’re asking for regular public updates along the way so the process stays accountable. They also are calling for better access to specialized movement disorder care, more support for caregivers, expanded rehabilitation and mental health services, and stronger coordination across federal agencies.
The letters were also clear that the plan needs to fit the full picture. Parkinson’s disease may be the anchor, but the community it serves is wider, spanning different ages of onset and a range of related disorders, including progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy, and dementia with Lewy bodies.
Research priorities ran through every letter as well. The organizations want to see faster progress on biomarkers, broader access to clinical trials, and better data sharing across the field, and they were direct about the bottom line: discoveries need to reach patients sooner.
Each letter reflected the particular concerns of the community it represents, but the underlying message was consistent: this is a historic moment, and the council should treat it that way. Monday’s meeting is the starting point for something the Parkinson’s community has long desired, a coordinated national strategy to help find treatments, therapies and eventually a cure. These organizations want to see it move with the seriousness that moment deserves.
The Advisory Council on Parkinson’s Research, Care, and Services holds its inaugural public meeting on June 29 starting at 10 a.m. eastern, where members will begin shaping the federal National Parkinson’s Project and hear directly from the Parkinson’s community. Watch it live at hhs.gov/live
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