Parkinson's Foundation PAIR Leadership Awards supported scientists working to formally engage people who live with Parkinson’s disease (PD) in their research. In 2019, these awards were integrated into the Parkinson’s Foundation Community Grants program — grants that help fund community-based education and outreach programs, along with local research initiatives, that address unmet needs in the Parkinson’s community.
Increasing Racial and Ethnic Diversity in Parkinson’s Research
Tammyjo Best, LPN
PAIR Leadership Award
Parkinson’s disease research studies lack racial and ethnic diversity. Less than 5% of the current research population is racially or ethnically diverse.
Tammyjo Best, LPN, received a PAIR Leadership Award from the Parkinson’s Foundation to increase diversity in Parkinson’s research being conducted by Emory University. Her goal is to create new programming focused on areas that have historically kept diverse populations away from scientific research studies.
To achieve this goal, she will make funds available to sponsor travel, printed materials and incentives for research participants. Tammyjo will recruit participants through pre-existing programs at Emory, as well as through community outreach. In addition, she will host events to improve access to clinical research for underrepresented minority populations. The program will focus on content to ensure that everyone has equal access to the region’s best Parkinson’s education, screening and care.
Nik Roberts lives with Parkinson’s and is a Foundation Research Advocate on this grant. “We want to be sure new therapies are safe and effective for everyone,” Nik said. “We also want everyone to have the opportunity to participate in research.”
Our hope is that this research will lead to increased numbers of diverse patients in research studies related to Parkinson’s disease.
Can High-Intensity Boxing Improve Sleep in Parkinson’s?
Linda Denney, PT, PhD, MAppSc
PAIR Leadership Award
More than 95% of people with Parkinson’s experience sleep-related problems. Sleep behavior disorder (RBD) and daytime sleepiness impact mobility and fall risk in adults with Parkinson’s. It is unknown if there is a relationship between exercise intensity and sleep quality.
Non-contact boxing, a popular high-intensity exercise designed for people with Parkinson’s, improves mobility. Linda Denney, PT, PhD, MAppSc, received a PAIR Leadership Award from the Parkinson’s Foundation to study the effect of boxing on sleep in people with Parkinson’s.
Her goal is to determine if boxing improves sleep and reduces daytime sleepiness in people with Parkinson’s. She will also study whether improved sleep leads to better mobility.
To achieve this goal, she will study two groups of people with Parkinson’s. One group will participate in high-intensity, one-on-one 30-minute boxing training twice a week for six weeks followed by a self-reported activity worksheet in weeks 7-12, while the other group will log their activity for 12 weeks. Both groups will be assessed for sleep quality, daytime sleepiness, and functional movement at the beginning of the study, after six weeks and again after 12 weeks.
Brian McDonald is living with Parkinson’s and is a Foundation Research Advocate on this grant. “Good sleep makes a big difference in the quality of life for people living with PD, including me,” Brian said. “This study will help us understand if we should incorporate intensive exercise such as boxing in our day-to-day lives to improve sleep. We hope this knowledge will empower people with PD to engage in activities that better their lives.”
We anticipate that this study might show that high-intensity exercise improves sleep, reduces daytime sleepiness and improves mobility in people with Parkinson’s.
Impact of Exercises on Fatigue, Anxiety and Depression in Parkinson’s
Mary Santarelli Feldman, DO
PAIR Leadership Award
There is strong evidence that exercise is beneficial for the motor symptoms of Parkinson’s disease. However, the effect of exercise has not been extensively studied on non-motor symptoms such as fatigue, anxiety and depression. These symptoms often are more bothersome, difficult to treat and are associated with a poorer quality of life than motor symptoms. Persistent anxiety occurs in up to 55% of people with Parkinson’s, depression in up to 56% and fatigue in up to 58%.
Mary Santarelli Feldman, DO, received a PAIR Leadership Award to study the impact of three types of exercises (yoga, spinning, and dance) on fatigue, anxiety and depression in Parkinson’s.
Her goal is to determine which exercise type may provide the most benefit for these non-motor symptoms. To achieve this goal, she will study three groups of people with Parkinson’s, evenly divided between spinning, yoga and dance classes. Classes will be conducted for one hour, twice a week for six weeks. Participants will answer questionnaires before and after exercise classes to measure levels of anxiety, fatigue and depression.
John Tomeny is living with Parkinson’s and is a co-investigator on this grant. “We need more evidence on which types of exercise are most effective for specific symptoms, especially as it relates to non-motor symptoms,” John said. “Often times people with Parkinson’s don’t know which type of exercise to focus on for their particular symptoms. The findings from this pilot study can help us understand how to direct future research into prioritizing different activities as personalized medicine.”
Our hope is that we can identify inexpensive and safe exercise regimens that can be used to help improve these common non-motor symptoms.
Assessing Effectiveness of Online Spanish Speech Language Classes for PD
Meredith Bartlett, MA CCC-SLP
PAIR Leadership Award
Most people with Parkinson’s disease will experience changes in voice and speech at some point during the course of PD. Medications are not very helpful and usually provide better results when paired with a speech therapy program.
Underserved Parkinson’s communities in the U.S. lack access to speech language pathologists (SLP) trained in programs for speech treatment for people with Parkinson's. In Phoenix, AZ, people in the Hispanic community with Parkinson’s lack access to speech therapy programs due to the shortage of Spanish speaking SLPs trained in programs for people with the disease. Barriers like transportation and insurance coverage limit their opportunities even more.
Meredith Fonesca, MA CCC-SLP, received a PAIR Leadership Award from the Parkinson’s Foundation to study the impact of an online voice class for Hispanic people with Parkinson’s. Her goal is to determine whether these classes lead to improved speech.
To achieve this goal, she will offer a voice class online, in Spanish, for people with Parkinson’s. The class will consist of 16 sessions, twice a week for eight weeks. They will be able to take the classes individually at home or in small groups. She will assess the effectiveness of these classes by asking participants to provide brief recorded speech samples.
Ruby Rendon is a care partner for her mother who has Parkinson’s and is a Foundation Research Advocate on this grant. “It is so important that Spanish speaking communities have access to the care they need without language or the challenges of travel as barriers,” Ruby said. “Speech therapy can ensure that we can communicate with our loved ones to provide the best care to them that we possible can.”
Our hope is that if online speech language training classes are found to be effective in treating people with Parkinson’s, they could be offered in other underserved communities around the country to expand access
What’s Next: Reporting Our Findings
Overall, Parkinson’s Foundation research awards fund Parkinson’s studies than can span up to three years. Scientists submit yearly progress reports to the Parkinson’s Foundation, and we report findings once the studies have concluded. Stay up to date with our latest research findings at Parkinson.org/Blog.