Parkinson’s Foundation: Putting People with Parkinson’s Disease First
People with Parkinson’s disease (PD) can face numerous challenges. Some lack adequate access to high-quality, specialized health care and treatments. Others can’t find local resources and community programs for support. And many cannot afford or take advantage of genetic testing to help them qualify for enrollment in clinical trials.
The Parkinson’s Foundation understands these challenges and strives to make the lives of all those living with and affected by PD better today, while the search for a cure continues.
PD Education, Care and Research Programs
According to John Lehr, president & CEO, the Parkinson’s Foundation puts people with PD first in its education, care and research programs.
“Through our educational programs, we provide people with PD the information and resources they need to manage their daily lives, including materials focused on mobility, mood disorders and mindfulness,” he said. “Our care program is aimed at ensuring that people with PD receive the highest quality care possible and our research programs are designed to advance science so that we can ultimately cure this disease.”
The Foundation’s Global Care Network of Centers of Excellence and Comprehensive Care Centers provides care to hundreds of thousands of individuals with PD. Many of these Centers also serve as collaborators on research studies focusing on various issues such as hospitalization with PD and palliative care delivery.
“We are working to increase access to care by expanding the network to areas where little or no comprehensive care currently exists, with a particular emphasis on hard-to-reach and underserved areas,” Lehr explained, noting that the network is undergoing an expansion from 47 to 60 Centers of Excellence and has added a new level of designation for 15 Comprehensive Care Centers.
Expanding Research and Access to Genetic Testing
Lehr said that currently, genetic tests for PD are often unaffordable and not covered by health insurance. Moreover, many entities providing genetic tests do not offer genetic counseling, which is key to interpreting test results.
“Because of this, most people with PD and their clinicians do not know if they have a genetic component to their disease,” he said.
The Parkinson’s Foundation is working to address this unmet need through their work with PD GENEration: Mapping the Future of Parkinson’s Disease, an international initiative offering no-cost genetic testing and genetic counseling for people with PD. It is one of the world’s largest genetic testing studies to identify those with genetic mutations so they can participate in upcoming clinical trials.
In the research arena, the Parkinson’s Foundation funds investigator- and center-led basic research looking into the underlying causes and basic biology of PD. It also funds research on patient outcomes to see which investigations are having the greatest impact.
Lehr noted that the lack of new drugs to treat PD is due, in part, to the complexity of neurological diseases.
“Progress toward new medicines, better therapies and eventually a cure relies, almost exclusively, on innovative, high-quality research,” he said. “If we hope to improve the lives of those living with PD today, as well as those in the future, research efforts must be intensified.”
People with Parkinson’s Advisory Council
For the Parkinson’s Foundation, putting people with PD first also means engaging people with PD as collaborative partners. To that end, in 2006, the Foundation established its People with Parkinson’s Advisory Council. The Council is comprised of people with PD and care partners to ensure that the perspective of people living with PD is integrated into program development and priority setting.
Council members help to guide the Foundation’s research strategy; review and provide recommendations on programs, initiatives, policies and materials; serve as ambassadors for the Foundation in the PD community and public; identify and coordinate opportunities to share the Foundation’s resources; support local fundraising events and more.
“I am very proud to be a member of the People with Parkinson’s Advisory Council and to have a leadership role within the Parkinson’s community,” said Council Member Kelly Weinschreider. “I appreciate the opportunity to work alongside the Foundation’s CEO, COO and the most talented and dedicated group of people working to help make life better for people with Parkinson’s disease. I am also thankful for the opportunity to work on a national, regional and local scale to raise awareness for PD. All of us on the Council truly have a seat at the table.”
Diagnosed with young onset PD at age 29, Weinschreider initially got involved with the Foundation after seeing a Facebook post recruiting women with Parkinson’s to work on a women with PD initiative. At the time, she had stopped working due to Parkinson’s and was looking for something to fill her time and get involved.
“I wanted to find something meaningful in my diagnosis,” she said. “I volunteered to be a member of the group and never looked back. Through the Council, I’ve had the opportunity to work on issues like improving mental health, educating the newly diagnosed and reaching people that don’t have access to care.”
Now living with PD for over 20 years, Weinschreider said the gravity of her diagnosis didn’t hit her until much later.
“I’ve overcome many challenges and continue to fight new issues every day,” she said, adding that the biggest challenges for her have been non-motor symptoms like constipation, bladder control and mental health, along with motor issues like balance and rigidity that she has helped to manage thanks to the Foundation’s exercise guidelines.
According to Lehr, the Foundation welcomes applications to the Council from anyone who is living with PD, is a PD care partner, or who was previously a PD care partner. The Foundation places an emphasis on recruiting people with PD and PD care partners from diverse backgrounds.
“You’re Not Alone”
When asked what advice she would offer to someone who is diagnosed with Young-Onset Parkinson’s disease (YOPD), Weinschreider said: “You’re not alone! There are many of us, diagnosed at a young age, who are living independent and happy lives. Find your place, through support groups or volunteer activities in the Parkinson’s community. It’s all about finding the right care and staying positive. Yes, there will be rough patches, but always look for the rainbow after the storm.”