Tag Archives: people with parkinson’s advisory council

Bringing WPC to You

This week, members of the Parkinson’s community are gathering for the 3rd World Parkinson Congress in Montreal, Canada. Can’t make it to Montreal? PDF is bringing the WPC to you. We’ll be reporting straight from Montreal, providing scientific updates, interviews with delegates, photos of the Parkinson’s Quilt display and more. What do you want to know from the meeting? Give us some ideas of the topics you’d like covered. We’ll do our best to report back with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and more than 50 of our Research Advocates (check out their… read more Read More

Expression vs. Insensitivity: A Message to Kanye West from a Person with Parkinson’s

From Tom Palizzi Chair, PDF People with Parkinson’s Advisory Council Kanye West is without question a richly talented and multifaceted artist. With utmost respect for freedom of expression and the inherent controversial nature of art in general, there is, however, a fine line between expression and insensitivity. “On Sight,” the opening track on Mr. West’s new album Yeezus, includes the lyrics:

Genetic Testing and You

From James Beck, Ph.D., Director of Research Programs The genetic testing company 23andMe recently announced that it had reached its goal of enrolling 10,000 people with Parkinson’s into its genetic testing program. I personally think that is fabulous. While genetic abnormalities that lead to Parkinson’s disease are rare, finding these cases has been a boon to understanding PD for all. From the location and then discovery of the first PD gene by PDF’s first supported fellow, Roger Duvoisin, M.D., and his colleagues in 1996 to the more recent genetic discoveries of today, PDF steadfastly supports research into understanding how genetics and… read more Read More

Are You a Driver and a Partner? Notes on ASENT and Patient Collaboration

Two Saturdays ago, in a Washington DC hotel, PDF pulled off an interesting little coup in its long-term bid to bring people with Parkinson’s (and other neurological disorders) into the center of conversations about the process of clinical research and drug development. The occasion was the plenary session on the last day of the annual scientific conference of the American Society for Experimental Neurotherapeutics (ASENT), and the title of the session was: New Models for Collaboration: Patients as Drivers and Partners in Neurological Research. I have served on the Board of Directors of this very worthwhile organization for three years… read more Read More

WPC Opening Ceremonies III

Rhona Johnson, one of PDF’s WPC reporters and member of our People with Parkinson’s Advisory Council, would like to follow-up on previous posts discussing last night’s WPC Opening Ceremonies. Rhona and others communicated that they were particularly moved at the ceremonies by the words of Bryn Williams, founder of WobblyWilliams.com. Here’s Rhona’s report: “At the Opening Ceremonies last night, Bryn Williams, Founder of WobbyWilliams.com spoke eloquently of how PD impacts people living with the disease, their families, friends and carers. He issued an urgent challenge to them all the work for a cure, saying, ‘Neurologists cannot do it alone. We… read more Read More

Bringing the WPC to You

In just five days, members of the Parkinson’s community will gather for the 2nd World Parkinson Congress in Glasgow, Scotland. Can’t make it to Scotland? PDF will bring the WPC to you. We’ll be reporting straight from Glasgow, providing scientific updates, interviews with attendees, photos of the Parkinson’s Quilt display and more. What do you want to know from the meeting? Give us some ideas of the topics you’d like covered. We’ll do our best to report back to you next week, with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and Clinical Research Learning… read more Read More