U.S. Senate Recognizes April as Parkinson’s Awareness Month

By Allyse Falce

On April 20, the U.S. Senate officially recognized April as Parkinson’s Awareness Month, bringing attention to Parkinson’s disease policy priorities and the needs of patients.

The resolution was introduced by the Senate co-chairs of the Congressional Caucus on Parkinson’s Disease, Debbie Stabenow (D-MI) and Johnny Isakson (R-GA).

“Every day Parkinson’s disease greatly impacts millions of individuals in the United States who are caregivers, family members, and friends of individuals with Parkinson’s disease,” the resolution states. “Developing more effective treatments for Parkinson’s disease and providing access to quality care to individuals with Parkinson’s disease requires increased research, education, and community support services.”

“We recognize Parkinson’s Awareness Month to honor patients and their loved ones. We must continue to support medical research that can lead to breakthrough treatments and improve quality of care,” said Sen. Stabenow. “I applaud the advocates working to find a cure for this disease.”

Sen. Isakson, who announced his own Parkinson’s diagnosis last summer, said, “This Parkinson’s Awareness Month holds special meaning for me. I’m honored to have the opportunity to take action on behalf of ‎the millions impacted by this disease, of which I am one. I am proud to see this recognition of Parkinson’s disease pass the Senate. Our advocacy community is strong, and together we can continue to advance Parkinson’s research to find a cure.”

Contact your elected representatives and encourage them to support important Parkinson’s policy initiatives.

To learn more about community Parkinson’s policy priorities, visit michaeljfox.org/policy and read our white paper on the topic.

Source:: Fox Feed Blog

Supporter Shares Her Take on Marriage of Research and Public Policy

By Allyse Falce

Today, The Michael J. Fox Foundation (MJFF) and the Parkinson’s Action Network (PAN) announced plans to operate as a single organization, with the goal of advancing public policy priorities and better treatments for people living with Parkinson’s disease (PD).

This unification builds on the strengths of both organizations, combining MJFF’s research expertise and PAN’s extensive knowledge of public policy to speed a cure for PD. Key staff members from PAN will join the Foundation and programmatic activity will transition to MJFF.

The Foundation launched a dialogue with patients and close supporters of both organizations to ensure MJFF’s policy work reflects the top concerns of the community. The conversations began with a webinar and a panel discussion at the annual PAN Forum, and additional feedback was captured through a survey.

Claudia Revilla, one such supporter of both MJFF and PAN, has been living with Parkinson’s disease since 2010. As a Fox Trial Finder Ambassador, Team Fox member and PAN Illinois Assistant State Director, Revilla has played an active role in the work of the two organizations. We asked her to share her thoughts about what unification means for the future of Parkinson’s public policy.

As a PAN grassroots advocate and an MJFF supporter, everything I do is to speed research toward a cure for Parkinson’s disease. But there is another, equally important part of finding a cure: supporting public policies that improve the lives of patients.

We can’t conduct studies if federal research funding is cut. We can’t bring new drugs to market if they get stuck in complicated regulatory approvals. And we won’t have the best quality of life if we lose access to therapy services.

I see nothing but benefits of this unification. Public policy will further MJFF’s mission to find a cure, and to ensure better quality of life for people living with Parkinson’s today. We are all in this together: all for one and one for all.

To read a white paper summarizing community input on top priorities for Parkinson’s public policy, visit www.michaeljfox.org/policy.

Contact your elected representatives and encourage them to support important Parkinson’s policy initiatives.

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Source:: Fox Feed Blog