Meet the Kansas Volunteer Advocating for the PD Community

By Allyse Falce

The Michael J. Fox Foundation’s policy and advocacy volunteers are a dedicated group of individuals who work to advance government initiatives in support of people with Parkinson’s disease (PD). They meet with their elected officials in Washington, DC; educate their communities on PD; and build relationships with local government officials to advance policies in their states.

Our volunteer from Kansas, Ron Dover, explains how public policy impacts people with Parkinson’s disease and why he advocates for the PD community. Stay tuned for upcoming profiles of policy and advocacy volunteers across the country.

Explore policy issues affecting the Parkinson’s community and learn how to contact your elected officials to make your voice heard.

1. What is your connection to Parkinson’s disease?

Ron Dover (RD): I was diagnosed with Parkinson’s disease in 2008. I consider myself to be lucky; even though my PD has progressed, I’ve been able maintain relatively normal movement. I attribute that to aggressive, imaginative and patient-centered management by my movement disorder specialist.

2. Why did you choose to become a policy and advocacy volunteer?

RD: Volunteering for The Michael J. Fox Foundation is the most effective way I can contribute to the goal of finding a cure and developing new therapies for those living with PD today. Achieving this goal is vital to the health of all of us with Parkinson’s disease and our caregivers.

3. This August you met with your U.S. senators’ staff while they were in their home states. Why is it important to hold these meetings, and what did you discuss?

RD: These meetings provide an opportunity for the constituent’s voice to be heard. It reinforces the fact that I’m the congressman’s constituent who actually has the disease — not a paid lobbyist.

I met with both my senators’ staffers, and I believe meetings with staffers can be as valuable as a meeting with a senator or congressperson themselves. The staffers don’t have the same limits on their schedule, and I believe it when a staffer says they’ll share our concerns with their member. If you can get on the same page as the staffer, you’ll be in good shape.

In these meetings we discussed the most pressing issues affecting the Parkinson’s community: securing $34 billion for the National Institutes of Health and $16 million for the Department of Defense Parkinson’s Research Program; passing the pending neurological disease data collection bill; and supporting telemedicine to improve health care for many individuals.

I’ve had a relationship with my U.S. representative, Kevin Yoder (R-KS), since 2002. I know he’s an ally of the Parkinson’s community, and I hope to have a meeting with him soon to discuss the policy issues affecting people with PD.

4. What is your favorite part of advocating for the Parkinson’s community?

RD: Knowing that through my efforts, and those of my fellow advocates, we can effect significant change that will benefit patients, families and caregivers.

Source:: Fox Feed Blog

Bill Wilkins Interviewed for Georgia Focus


WPF Co-Founder Bill Wilkins Interviewed for “Georgia Focus”

Tune in this weekend, or click to listen online as John Clark from Georgia News Network interviews a Parkinson’s Disease panel consisting of WPF Co-Founder Bill Wilkins, Team Cantore Founder Tamra Cantore, and Dr. Jorge Juncos, Emory Healthcare. Topics include information about Parkinson’s Disease, our upcoming “Polo for Parkinson’s” event, and Team Cantore’s “Sherwin Williams Countrified Rock for Research“.

THANK YOU to our Sponsors!

Jeff & Anne Keefer

Don & Cathy Allman

Sunday, October 9
Chukkar Farm & Polo Club
1140 Liberty Grove Road, Alpharetta, GA 30004
Gates: 1:00pm Polo Match: 2:00pm
Cost: Adults $50, Children $5

RSVP via Facebook and invite your friends

We hope to see you there!

– Wilkins Parkinson’s Foundation

Twitter @wilkinspf WPF on Facebook
Copyright © 2016 Wilkins Parkinson’s Foundation, All rights reserved.


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Source:: Wilkins Summer Newsletter

Breaking News: A New Dyskinesia Drug Will Be Submitted to FDA This Year

By Holly Teichholtz

A new formulation of amantadine to better treat levodopa-induced dyskinesia is entering the home stretch. Its developer, Emeryville, California-based biotech Adamas Pharmaceuticals, expects to file an NDA (New Drug Application) with the U.S. Food and Drug Administration later this year.

According to Nasdaq:

“Data from the study demonstrated a statistically significant reduction in LID at 12 weeks in patients receiving ADS-5102 compared with placebo, as assessed by the Unified Dyskinesia Rating Scale (UDysRS). The candidate was safe and generally well tolerated. The study met its primary endpoint.[…] Results from the study showed an improvement in activities of daily living (ADLs) in PD patients.”

As FoxFeed reported in December 2015, the company measured the impact of the drug using a new dyskinesia rating scale developed by Chris Goetz, MD, and Glenn Stebbins, PhD, of Rush University Medical Center with support from The Michael J. Fox Foundation.

Source:: Fox Feed Blog

Tracking Eye Movement to Diagnose Parkinson’s

By Kat McCarrick

The Michael J. Fox Foundation for Parkinson’s Research (MJFF) recently awarded a $1 million grant to The Virginia Commonwealth University (VCU) Schools of Medicine and Engineering to test a tool for diagnosing Parkinson’s disease (PD). Currently, there is no objective measurement (such as a blood test) doctors can use to definitively diagnose Parkinson’s disease. Researchers at VCU have developed a non-invasive eye test that could potentially inform whether someone has Parkinson’s disease.

Using infrared lights, the test tracks the eye movements of a person as they stare at a screen and follow prompts. Eye movements typically follow very distinct patterns. In Parkinson’s disease, the loss of cells that use dopamine (a brain chemical) to coordinate movement can cause alterations in these patterns. While these changes may be unnoticeable to a casual observer, they could be detected with more sensitive eye testing, such as that used by VCU researchers.

With the support of MJFF, the VCU team will replicate their research in additional academic centers in order to verify that the test is in fact able to accurately diagnose Parkinson’s. In addition, they hope to prove that the test can detect Parkinson’s before physical symptoms are present. Earlier and more precise diagnosis would allow doctors to begin disease-targeted therapies before the disease progresses and could also prevent misdiagnosis.

Read a post from the “Ask the MD” blog series to learn more about vision and Parkinson’s disease and how to manage visual symptoms.

Source:: Fox Feed Blog

Choosing Parkinson’s Medications

By Michael J. Fox Foundation

In this podcast, Thomas Davis, MD, of Vanderbilt University Medical Center, speaks about how doctors and patients work together to create a medication regimen.

Source:: MJFF Podcasts