***Template Letter for Public Comment
Please customize with your personal story and any additional concerns or recommendations before submitting.***
[Date]
Advisory Council on Parkinson’s Research, Care, and Services
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
Submitted electronically: nationalPDplan@nih.gov
Subject: Public Comment on the National Plan to End Parkinson’s
Dear Members of the Advisory Council,
I am writing to provide comments on the implementation of the National Plan to End Parkinson’s. I am a [person living with Parkinson’s/care partner/clinician/researcher/advocate/family member/community member], and I appreciate the opportunity to share my perspective.
Why this matters to me: [Briefly describe your connection to Parkinson’s disease. You may wish to include a personal story about how Parkinson’s has affected your daily life, your family, your work, or your community.]
Key concerns or priorities for the National Plan: The National Plan presents an important opportunity to bring greater urgency, coordination, and accountability to the nation’s response to Parkinson’s disease. The National Plan must include clear, actionable recommendations with identified implementation leads, timelines for implementation, measurable outcomes, and plans for ongoing coordination across federal agencies.
I urge the Council to recommend the following actions:
Develop a comprehensive estimate of the resources needed to address Parkinson’s disease.
A successful national strategy requires a clear understanding of the investments necessary to prevent, diagnose, treat, and ultimately cure Parkinson’s disease. The federal government should develop a transparent, evidence-based estimate of funding needs, including assumptions to develop the estimates, funding milestones, and phased implementation goals. The funding estimates should provide Congress and federal agencies with a shared understanding of the funding estimates that are necessary to make meaningful progress in research, care, and services for people with Parkinson’s and their families.
Prioritize improvements in care, services, and support.
People with Parkinson’s and their families need access to high-quality, coordinated care. The National Plan should include recommendations to improve access to movement disorder specialists, rehabilitation services, mental health support, caregiver resources, and community-based services. It should also address disparities in care for people living in rural and underserved communities.
Focus on outcomes that matter to people living with Parkinson’s.
Recommendations should prioritize maintaining independence, improving quality of life, reducing caregiver burden, and minimizing the financial impact of Parkinson’s disease on individuals and families. These goals should be reflected in both research and care-related priorities. People living with Parkinson’s, care partners, and advocates should continue to have a voice in shaping implementation of the National Plan. The lived experiences of people with Parkinson’s and their families are essential for identifying unmet needs and evaluating progress of the National Plan.
Thank you for your consideration and for your commitment to improving the lives of people with Parkinson’s disease. I urge the Council to ensure that the National Plan leads to measurable action and reflects the priorities of those most impacted by the disease.
Sincerely,
[Your Name]
[City, State]
[Email Address]