Discover the latest updates, insights, and stories from across the GRN-FTD community. From global events and expert-led webinars to in-depth blog posts, podcasts, and videos, this is your destination for staying informed and inspired.
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March 5, 2026
AviadoBio affirms its commitment to the FTD-GRN community and highlights ongoing research and clinical trial options through trusted resources.
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February 17, 2026
Learn how frontotemporal degeneration (FTD) research—from observational studies to clinical trials—drives understanding, treatments, and future cures.
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February 13, 2026
Passage Bio affirms its commitment to the FTD-GRN community and highlights ongoing research and clinical trial options through trusted resources.
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January 23, 2026
Discover how to get involved with CureGRN in 2026 and help drive research, awareness, and advocacy for families facing GRN-related FTD. Together, our collective voices and actions bring us closer to treatments, support, and lasting change.
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November 21, 2025
Support CureGRN this Giving Tuesday and help accelerate research, awareness, and advocacy for families affected by GRN-related FTD. Your generosity fuels breakthrough science, greater clinical awareness, and hope for a future where this devastating disease can be stopped.
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November 3, 2025
Discover the resilience of the CureGRN community—families, caregivers, researchers, and advocates united in the fight against GRN-related frontotemporal degeneration (FTD). Learn how hope, science, and shared stories are blooming through stone to drive awareness, connection, and progress toward a cure.
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Jacquelyn Shapiro shares her family’s story of her mother living with the genetic form of FTD caused by a progranulin (GRN) mutation. Although her mother’s parents showed no signs of FTD, genetic testing revealed that Jacqueline’s grandfather carried the same progranulin mutation along with a protective genetic modifier called TMEM106B. This discovery highlights how complex genetics can be—and why everyone diagnosed with FTD should consider genetic counseling and testing. Doing so can uncover valuable medical insights and open eligibility for clinical trials. Learn more by reading the AFTD’s new recommendations and explore helpful resources with the Progranulin Navigator.
Even the same genetic form of progranulin frontotemporal degeneration (GRN-FTD) can present in different ways within the same family. Rachael explains how her mother's GRN-FTD was hard to recognize and appeared in contrasting ways than how GRN-FTD appeared in her two aunts.
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November 5, 2025
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Jackie and Wanda, CureGRN
The Remember Me podcast dives into one of the most personal questions in the FTD community — Should I get genetic testing? This episode features an incredible lineup of voices, including Jackie and Wanda from CureGRN, two powerful advocates who bring heartfelt perspective and lived experience to the conversation.
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September 25, 2025
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Dr. Patrick Short, CEO of Sano Genetics, and CureGRN Founder, Wanda Smith
EP 206: The Genetics Podcast is joined by Wanda Smith. They discuss Wanda’s journey from caring for her mother to driving FTD research, the discovery of progranulin and development of new therapies, the diagnostic odyssey and need for earlier genetic testing, and how the CureGRN community is expanding support and awareness worldwide.
Listen
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October 9, 2025
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Angela Lunde, Mayo Clinic, Ansel Dow, CureMAPT, and Wanda Smith, CureGRN
When a family learns FTD is genetic, it’s important to find relatives and convey the potential risk to them, as well as raise awareness around the hope research progress offers for a treatment in the future. Join us for this webinar, where we’ll discuss practical approaches to navigating the sensitive topic of sharing genetic risk information with extended family.
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April 30 - May 1, 2026
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Seattle, WA
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Researchers, family advocates, AFTD staff and ambassadors, and caregiving experts
People diagnosed, care partners, families, friends, healthcare professionals, and researchers are invited to connect with people who understand the journey, learn about available resources and supports, and engage with experts to gain insight on the latest in FTD research and approaches to care.
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February 25, 2026 from 1:00 to 4:00 p.m. EST
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Virtual
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Hear from genetic counselors, neurologists, and social workers on the genetics of FTD and ALS
This annual event addresses topics for people living with or at risk for a familial and/or genetic form of FTD/ALS.
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September 21–27, 2025
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Worldwide
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World FTD United
This year World FTD Awareness Week poses the question to the world: “What If It’s FTD?”
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September 9–11, 2025
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Washington D.C.
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Wanda Smith
CureGRN Founder Wanda Smith presents at the C-Path 2025 Global Impact Conference to connect with leaders, innovators, and change makers across the drug development field.
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June 6–8, 2025
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Conshohocken, PA
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Jary Larsen & Wanda Smith
CureGRN will present on the role of genetic testing in familial ALS/FTD at this community-led event.
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May 27, 2025
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Andrew Arrant, PhD, UAB
Dr. Arrant will present on his research showing how progranulin supports neuronal survival and lysosomal function, shedding light on FTD progression and therapeutic strategies.
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May 7, 2025
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Washington, D.C. & Virtual
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CureGRN will participate in this national advocacy event alongside I AM ALS, promoting research funding and awareness for ALS and FTD.
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May 1–2, 2025
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Broomfield, CO
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Wanda Smith
CureGRN joins the AFTD Education Conference with a session focused on the power of genetic knowledge in familial FTD diagnosis and support.
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April 29, April 30, & June 2, 2025
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Bethesda, MD & Virtual
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The ADRD Summit, hosted by NINDS, will gather scientific and community stakeholders to shape future research priorities in Alzheimer's disease-related dementias.
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April 22, 2025
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Carrie Milliard, MS, CGC, CCRC
Carrie Milliard will speak on the value of the AFTD Disorders Registry and its role in helping progranulin families contribute to research.
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April 7, 2025
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Hilton San Diego Bayfront
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CureGRN will attend AFTD’s informal social gathering during the AAN Annual Meeting to connect with researchers, clinicians, and families.
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April 5–9, 2025
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American Academy of Neurology Annual Meeting
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Wanda Smith, Dr. Peggy Plews-Ogan, Dr. Jinsy Andrews, Andrea Goodman
Cures Collective hosts a panel on collaboration in neurodegenerative disease at AAN’s Innovation Hub.
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March 4, 2025
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Erynn Gordon, MS, CGC
Erynn Gordon will present on the Progranulin Navigator (PIN), highlighting how it guides families through genetic testing and clinical trial options for progranulin-related FTD.
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January 22–24, 2025
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Mandarin Oriental, Miami, FL
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Jackie Shapiro Presents
Risk Factors for FTD will be explored at AFTD’s Holloway Summit, bringing together experts and advocates focused on advancing understanding of FTD.
Learn MoreFor media inquiries about CureGRN families or the impact of related medical research and clinical trials, please contact media@curegrn.org.
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