CureGRN is proud to announce that Jacquelyn Shapiro, MSW, participated in the International Conference on Alzheimer’s and Parkinson’s Diseases (AD/PD), March 17–21,2026, in Copenhagen, Denmark.

Jacquelyn Shapiro, New York, presented a powerful and deeply personal poster titled: “Unraveling a Hidden Legacy: GRN, TMEM106B, and My Family’s FTD Journey.”

Her poster presentation highlights the collaborative efforts of a family determined to uncover the genetic underpinnings of frontotemporal degeneration (FTD), with a focus on GRN and TMEM106B. Through perseverance, advocacy, and partnership with researchers, her family’s efforts helped bring critical genetic questions to scientists—contributing to a deeper understanding of what is driving disease within their family and others affected by GRN mutations and what may be protecting their family members too.

By combining scientific insight with lived experience, Jacquelyn’s work underscores the real-world impact of genetic discovery, early awareness, and patient-driven advocacy. Her story demonstrates how families can play a pivotal role in advancing research and accelerating answers.

The AD/PD Conference is a premier international forum bringing together scientists, clinicians, and advocates dedicated to advancing research in Alzheimer’s disease, Parkinson’s disease, and related neurodegenerative disorders. CureGRN’s presence highlights the growing importance of progranulin (GRN) research and the essential role of patient and family voices in shaping the future of treatment and care. Jacquelyn Shapiro, says, “It has been such an honor to spend the past few days in Copenhagen sharing my family’s story at a deeply scientific conference. In a space filled with data and research, I am proud to stand out by bringing something personal, emotional, and human to the conversation. My poster is unlike any other here, and it’s been incredibly meaningful to share the realities of family and genetics with researchers and doctors from around the world. These moments, where science meets lived experience, are truly special.” 

Wanda Smith, CureGRN founder, says, ”We are honored to see Jacquelyn representing the CureGRN community on this global stage—advancing awareness, fostering collaboration, and bringing hope to families affected by FTD worldwide.”

Visit here to watch the AD/PD conference highlighting Jacquelyn’s family involvement in seminal GRN research.