Dr. Lauren Massimo, Associate Professor and Co-Director of the Penn FTD Center, presented on the FTD Clinical Research Learning Institute (CRLI) at the National Institute of Neurological Disorders and Stroke (NINDS) 2024 Non-Profit Forum.
The Penn FTD Center, in partnership with The Association for Frontotemporal Degeneration and a very motivated care partner, collaborated to create a one-day virtual program that empowers individuals diagnosed with FTD, their caregivers and loved ones to be strong advocates in the field of FTD research by educating them on the clinical research process. Certification as an FTD Research Ambassador provides opportunities to influence and improve the FTD research process. Research Ambassadors were also educated to share information about the research process, and address common misconceptions about research, to patients and caregivers through support groups, conferences, social media, and other platforms.
During her presentation at NINDS 2024 Non-Profit Forum, Dr. Massimo spoke on the importance of advocacy programs and the need for engagement opportunities to connect patients, care partners, researchers, scientists and clinicians.
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For questions regarding the Penn FTD Center, please call 215-349-5863 or email PennFTDC@pennmedicine.upenn.edu.