STATUS
We are currently near the end of Phase 1 and will be presenting an abstract on the findings from our needs assessment at the International Congress of Parkinson's Disease and Movement Disorders in
Madrid, Spain, in September 2022.
OBJECTIVES
To identify the unmet needs of the YOPD community
To give the YOPD community a platform for their voices to be heard
To create and implement solutions to meet these needs
To raise awareness regarding these needs and their respective solutions so that organizations and community leaders are better equipped to cater to persons with YOPD
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In our mission to educate, empower, and equip the Parkinson’s community, we are continually striving to identify unmet needs. To that end, we have partnered with PD community leaders to create a research project focused specifically on persons with YOPD.
BACKGROUND
According to the Parkinson’s Foundation, “Young Onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Most people with idiopathic, or typical, PD develop symptoms at 50 years of age or older.” While people with PD share many common symptoms, it is well known that it does not affect everyone the same way, and this is especially true when factors such as age and life stage come into play.
Those with YOPD often have children in the home, are still engaged in the workforce, and have greater depression – we want to quantify these and other issues and, eventually, work to ensure that we have effective interventions that may help.
Check out our conversation with Dr. Maria De Leon, Movement Disorder Specialist living with YOPD for 15 years:
DESCRIPTION
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Conduct a brief but comprehensive survey to identify areas of unmet need, frustration, or dissatisfaction among the YOPD community
Write & publish a research paper that describes the results of this survey along with proposed solutions
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Implement potential solutions locally in DFW and conduct a study to measure the outcomes and efficacy of said solutions
Write & publish a second paper which would describe the implementation of solutions and the measured outcomes
LEADERS
Bradley McDaniels
University of North Texas, Department of Rehabilitation and Health Services
Shelley Kurian
Skypass Foundation
Dr. Shilpa Chitnis
University of Texas Southwestern Medical Center, Department of Neurology
Dr. Indu Subramanian
David Geffen School of Medicine, UCLA, Department of Neurology