Organizations together receive $100,000 grant from Genentech to address challenges faced by patients and caregivers of color living with multiple sclerosis and Alzheimer’s disease
Philadelphia, PA (May 6, 2019) – This week, at the American Academy of Neurology Annual Meeting, Genentech announced that UsAgainstAlzheimer’s (UsA2) and the Accelerated Cure Project for Multiple Sclerosis (ACP) are the recipients of its first-ever Advancing Health Equity in Neuroscience Award.
The advocacy organizations will be jointly awarded $100,000 to identify themes and common priorities among patients and caregivers of color related to interactions with health professionals, participation in research, and care practices. The findings will be used to guide the creation of educational materials aimed at caregivers and physicians that address the key needs and concerns of individuals living with, or caring for, someone living with Alzheimer’s disease and related dementias (ADRD), and multiple sclerosis (MS).
This area of health disparities research and practice is under-addressed despite African Americans and Latinos facing greater risk for neurological diseases like Alzheimer’s and MS. In fact, African Americans are twice as likely to develop Alzheimer’s when compared to non-Hispanic whites, and Latinos are 1.5 times more likely. In the US, MS also appears to be more prevalent in African Americans than in other groups, contrary to the longstanding belief that MS only affects non-Hispanic whites. While far less is known about how the disease progresses in African Americans and Latinos, emerging science is showing that MS manifests earlier and progresses more severely among these groups as compared to non-Hispanic whites, exacerbating the caregiving burden.
“Alzheimer’s is a tremendous hardship no matter who you are, and these difficulties are compounded in communities of color where patients and caregivers face systemic barriers to treatment, quality care, and research opportunities,” said Jason Resendez, Executive Director of the LatinosAgainstAlzheimer’s Coalition, convened by UsA2.“We must promote brain health equity at every level of the healthcare system.”
“As with Alzheimer’s, MS imposes an unequal burden on communities of color. The disease can progress more severely in minority groups, and differences in cultural norms and health system use have a negative impact on outcomes as well,” said Hollie Schmidt, Vice President of Scientific Operations for Accelerated Cure Project. “Minority populations are severely underrepresented in research, and without their participation in studies, it is impossible to create an optimal system of care in communities of color. With the grant from Genentech, this project will help to change that reality.”
About Accelerated Cure Project for MS (ACP)
ACP (www.acceleratedcure.org) is a patient-founded non-profit organization dedicated to accelerating research efforts to improve diagnoses, optimize treatment outcomes, and develop cures for MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with resources they need to explore novel research ideas that can lead to better outcomes for people living with MS. The major programs of Accelerated Cure Project are the ACP Repository and the iConquerMS™ People-Powered Research Network (www.iConquerMS.org).
About UsAgainstAlzheimer’s (UsA2)
UsAgainstAlzheimer’s (UsA2) is a disruptive advocacy and research-focused organization that is pushing for expanding treatments and accelerating towards a cure for Alzheimer’s disease. UsA2’s transformative programming is laser-focused on proactive brain health across the lifespan and understanding what matters most across the lived experiences of those affected by Alzheimer’s in the service of preventing, treating and curing this disease. We are working to ensure that all communities have their voices heard, and get a chance to be brain healthy from the earliest years while building resistance to and resilience against possible cognitive decline.
