Posts

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.

Stay up-to-date on Parkinson’s policy and advocacy news by signing up for email updates below.

Source:: Fox Feed Blog

2015 Birmingham Symposium Video Recap 3: NIH/NINDS Update

We are pleased to present part 3 of an 8 part video series recapping the 2015 Birmingham Symposium hosted by The Parkinson Association of Alabama. Click the following link to watch the video: NIH/NINDS Update by Beth-Anne Seiber.

2015 Birmingham Symposium Video 2: UAB Update

The Parkinson Association of Alabama was honored by the response to the 2015 Birmingham Symposium. We very much appreciate the support and enthusiasm from the many patients, caregivers, thought leaders, medical professionals, and sponsors that made this years event so successful. We could not do it with you and look forward to seeing you again at next years event.

Over the next two weeks we will be posting a video recording of each Symposium program segment that includes both the presentation and speaker. We encourage you to review and share this valuable information with anyone that may be interested.

We want to extend a special thanks to Online Symposia for donating their time and expertise to develop such a well crafted video record of the 2015 Birmingham Symposium.

Click the following link to watch the second video: UAB Update by Dr. David Standaert.

2015 Birmingham Symposium Video 1: Introduction

The Parkinson Association of Alabama was honored by the response to the 2015 Birmingham Symposium. We very much appreciate the support and enthusiasm from the many patients, caregivers, thought leaders, medical professionals, and sponsors that made this years event so successful. We could not do it with you and look forward to seeing you again at next years event. 

Over the next two weeks we will be posting a video recording of each Symposium program segment that includes both the presentation and speaker. We encourage you to review and share this valuable information with anyone that may be interested. 

We want to extend a special thanks to Online Symposia for donating their time and expertise to develop such a well crafted video record of the 2015 Birmingham Symposium. 

Click the following link to watch the first video: Program Introduction from Ken Cater.