How can we put ourselves out of business? Finding the cure for Parkinson’s disease (PD) has been the goal of the Parkinson’s Disease Foundation (PDF) since 1957. But Parkinson’s is still around. And so are we.
The investments of PDF over the past six decades have done much to advance our understanding of PD. They have improved the lives of millions of people worldwide. But we still don’t have the cure. Nothing that can stop the disease. Nothing that can slow it. That is simply unacceptable. There are seven to 10 million people worldwide living with PD who count on us to move the science and the care forward. We owe it to them to make this happen.
In 2014, under the guidance of our Board of Directors, Scientific Advisory Board and People with Parkinson’s Advisory Council, PDF began a year-long examination of how far we have come, and how we can contribute to solving the puzzle moving forward.
The truth is that no one knows when and from where the cure will come. The reality is that many people hold a piece of the puzzle but lack the tools to realize their contribution. PDF’s strategy is to build a team of people — the best and brightest leaders in science, health care, and the patient community who can move the dial in PD research and care — and then mobilize them to work toward the cure together.
After all, if each member has a piece of the PD puzzle, imagine what can happen when we put them together. Here, we report on our plan.
Investing in Research Leaders
The first urgent question PDF asked was: how can we invest in the innovative ideas of young scientists, while ensuring they have the tools needed to transition into our future leaders?
In years past, a talented young investigator — in his or her late 20s or early 30s — was almost assured federal funding to advance innovative ideas and establish a career. But today most scientists have to wait until their mid-40s for funding.
In the meantime, the field’s future leaders are standing on a precipice facing a “valley of death” between their scientific potential and the funding they need to make it happen. We are losing them from the PD fight before they have a chance to contribute.
PDF’s track record of funding early-career scientists is unparalleled — our funding has nurtured leaders driving today’s new therapies — but it is no longer enough. We need to fund the ideas of young innovators and keep the pipeline of scientists full. And we are doing that by focusing $2 million of our total $4.6 million investment in research on early-career scientists.
As part of PDF’s plan to build research leaders, first we recruit scientists early with ‘small but mighty’ fellowships. These low-cost, high-reward programs motivate students to dedicate their careers to PD, while advancing the research of senior scientists.
Once they graduate, we will help to kickstart their innovative ideas. We will step in with an extensive offering of fellowship opportunities — both our own and other opportunities offered with partners like the American Academy of Neurology and the Howard Hughes Medical Institute — that allow scientists to cultivate creativity and take initial steps to prove the potential of their scientific ideas.
Lastly, we’ll help them cross that “valley of death.” As scientists face pressures that may force them to switch careers and leave their research projects incomplete, PDF will be the bridge to ensure no promising idea is left unstudied. We will invest, through mechanisms like the Stanley Fahn Transition Award (named for PDF’s Scientific Director of 40 years), to keep them in the field and help them potentially find a cure for PD.
Investing in Health Care Leaders
We know from our experience that when people with PD work with a health care team — movement disorder specialists, nurses, and physical, occupational and speech therapists — their lives improve.
PDF has a track record of preparing experts to treat PD on the frontlines. We are the largest private funder of training for early-career neurologists to specialize in Parkinson’s, with more than 150 doctors trained to date.
But all too often, professionals on the frontlines are left without sufficient resources or training in PD. For example, nursing students receive less than one hour of instruction on PD during four years of education! Once in the field, many are left to learn about PD themselves, with few opportunities for continuing education.
We must do more. We will start by investing $600,000 a year in growing and empowering health care leaders of today and tomorrow. PDF is preparing future nurses and health care professionals by reaching those with the greatest impact — their teachers — through initiatives such as our flagship Edmond J. Safra Foundation Visiting Nurse Faculty Program at PDF, which has trained nearly 150 faculty members at nursing schools nationwide. These leaders are, in turn, sharing their knowledge with 9,000 students each year and are influencing national standards for nursing education.
Learning from this success, we are implementing a similar model for the field of physical therapy. We expect that within three years, we will have trained 40 faculty leaders, who will in turn train over 1,800 students.
Second, we are supporting professionals on the frontlines, by arming professionals in the nursing, physical therapy and occupational therapy fields — both in conventional classrooms and online — with the tools they need to stay informed and support their patients. Our offerings include free continuing education opportunities and patient education materials.
Investing in Patient Leaders
As those with the most at stake, people with Parkinson’s disease can help the rest of us get our priorities straight. We have seen this prove true in other health communities, when engaged patient advocates have helped to accelerate new treatments.
This is why PDF has advocated relentlessly to make patient engagement a reality. For us, this means engaging people with PD as partners in every part of our work. While we have seen progress, there is much more to be done to ensure that people with PD are recognized and tapped for their insights and potential to help speed research.
This is why PDF is investing $500,000 a year to expand our work to mobilize the grassroots community.
We will continue to build our groundbreaking Parkinson’s Advocates in Research program, which has provided training to more than 260 Research Advocates, who are now working with 400 research professionals on the frontlines to bring better treatments at a faster pace. And we will take the program even further by proactively seeking and guiding advocate-researcher collaborations at universities, pharmaceutical companies and government agencies.
We are also mobilizing new patient leaders to meet specific unmet needs in the community through programs such as the Women and PD Initiative, which launches this fall with a class of 30 women leaders living with Parkinson’s. Each will return to her community with the tools needed to advocate for other women with PD.
Working Together Towards the Cure
PDF’s investments in leadership lay a foundation for improving science, health care and patient engagement. But our ultimate goal is ending Parkinson’s disease. What comes next?
PDF is not only developing leaders; we are also mobilizing them to work toward the cure — together. After all, science and care are team efforts. To that end, PDF has invested close to $50 million in collaborations since 1957, largely toward teams at PD research centers. Today we are taking the strategy further by expanding the opportunities for research, health care and patient leaders to work together.
For example, at Columbia University Medical Center, where we have long funded collaborative teams within the field of PD, we are currently funding teamwork between PD specialists and bioengineers, who are experimenting with ways to design shoe insoles to ease freezing of gait. And at our research center at Rush University Medical Center, we are funding an interdisciplinary project that may one day help doctors to predict who will get PD as part of routine colonoscopies.
We are also expanding funding for research teams that incorporate insights from people with Parkinson’s through our PAIR Leadership Awards and our Community Choice Research Awards. For the latter, we invite the patient community to identify research priorities and then we engage teams of researchers, health professionals, patients and outside experts (e.g., gastroenterologists and psychiatrists) who can help to address them.
No account of PDF efforts in fostering collaborations would be complete without reference to our work sharing PD science with the entire team. We do this online, in print and most recently, through a new partnership with Nature Publishing Group, the world’s leading publisher of scientific journals. The new journal, npj Parkinson’s Disease, is freely available to all with the click of a button.
Conclusions
PDF’s goal is to put itself out of business by ending PD. Until the day comes when we close our doors, please know that they are open to you. Take advantage of our free educational materials, webinars and toll-free HelpLine to find answers, support and resources to help you take charge of PD. Join our team. Get involved as a patient advocate, apply for research funding or take our professional courses. Know that each day, our promise to you is to do everything in our power to accelerate new treatments and end Parkinson’s disease.
And when the day comes to close our doors forever, we can all remember that PDF will not have done it alone: we will have done it as a team.
http://www.pdf.org/fall15_investment_leaders?utm_source=newsletter&utm_medium=email&utm_campaign=general
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