Letter From the Executive Director
Something seems to be stirring in the Parkinson’s community. From government to grassroots, people are increasingly taking matters into their own hands, to advance research, to raise awareness and to step up fundraising. And at PDF, this energy and action makes us hopeful.
Take the increased attention from the federal government, for example. On April 2, President Obama announced the $100 million BRAIN Initiative. During the ceremony at the White House, which I was privileged to attend, he called out Parkinson’s as one disease which he believes will be better understood through mapping of the brain. Following the announcement, Professor Eric Kandel, a Nobel Prize winner for his work on memory told me, “This is historic!”
Much of the new momentum has been at the grassroots level. This is in part generated by a growing interest among scientists, doctors, industry and government in involving advocates in research. This idea, called patient engagement, is the subject of our feature article in this edition of News & Review. It recognizes that in the course of developing treatments and improving care, success relies upon the involvement of people with PD and their loved ones.
Another example of the grassroots in action was recently evident during April, Parkinson’s Awareness Month. (This is the birth month of Dr. James Parkinson, who first observed PD in 1817.) At PDF, we have observed growing participation and interest in awareness month, as evidenced by the photographs on pages 10 and 11.
Unfortunately, this new grassroots buoyancy does not yet seem to find a parallel in success with drug development. Of the last 16 potential PD treatments to enter clinical trials, 14 — including, most recently, the gene therapy technique that uses the growth factor neurturin — “failed.” Even here, not everyone is pessimistic; our own James Beck, Ph.D., said, “Even when a new drug is not proven effective in trials, studying it helps us to better understand existing drugs and may help pave the way for other, related therapies.”
In science, a disappointing past is not necessarily the prologue to the future; it can as well be the platform for re-imagining things, and making necessary changes in course.
Read this edition of our newsletter critically, with reasoned hope and cautious optimism. Take heart from the wonderful stories of brave people and promising ideas. And please call us if you have opinions to share or questions to ask. At PDF, reader comment is our one of our main engines of improvement.
Have a wonderful summer!
Robin Anthony Elliott