Earlier this month, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) attended an important (virtual) meeting with the World Health Organization (WHO) to talk about Parkinson’s disease. This is the first time in over two decades that WHO convened a meeting with experts from around the world to address a global policy and research agenda for Parkinson’s. As part of the United Nations, WHO works internationally to promote health, respond to health emergencies and guide health care policy.
MJFF representatives Rachel Dolhun, MD, senior vice president of medical communications; Todd Sherer, PhD, CEO; Bernadette Siddiqi, senior associate director of research partnerships; and Ted Thompson, JD, senior vice president of public policy, joined 30 international experts for the two-day meeting. MJFF Patient Council member Larry Gifford also contributed a critical patient perspective.
“It’s great to have the World Health Organization’s attention on the issues people with Parkinson’s face,” said Gifford. “We all need to work together — think global, act local — to find better treatments and a cure for Parkinson’s disease.”
The meeting covered public health challenges, such as pesticides and chemicals linked to Parkinson’s. (MJFF’s policy team advocates for regulations and legislation that impact patients and families, including banning paraquat, an herbicide that increases Parkinson’s risk.) Group discussions focused on prevention, diagnostics, treatment and advocacy with a focus on low- and middle-income countries.
“It seems people with Parkinson’s face similar challenges around the world — such as stigma and lack of access to specialty care and treatments — but to a much different extent,” said Dr. Dolhun. “The Michael J. Fox Foundation’s work in addressing these needs includes The Edmond J. Safra Fellowship in Movement Disorders, which aims to grow the global base of expert Parkinson’s doctors and researchers.”
So what comes next?
The stakeholders will develop a paper to inform the United Nations on:
- Recommendations for low- and middle-income countries to address the stigma of Parkinson's through public education campaigns and other strategies
- Efforts to help prevent Parkinson’s through public policy (e.g., banning toxic chemicals from the environment)
- Ways to improve diagnostics and treatment of Parkinson’s around the world
We are committed to working with WHO and other stakeholders toward improving the lives of all people and families with Parkinson’s through advocacy and research to speed better treatments and a cure.