We strive to connect and support families affected by the progranulin gene mutation by raising awareness, providing links to educational and clinical resources while advocating for policies that enhance research, healthcare, and treatment options for GRN-FTD.
We unite families across the globe affected by the progranulin gene mutation. Together, we strive to transform the lives of those at risk and those affected by FTD-GRN through collective action, hope, and relentless pursuit of scientific advancement.
Build a vibrant community to empower individuals and families by serving as a link to scientific knowledge, expertise and research opportunities.
Increase awareness among the public, healthcare providers, and policymakers about the symptoms, challenges, and profound human impact of FTD-GRN, as well as the lived experiences of those affected.
Serve as a central hub linking to resources for genetic counseling, testing, early diagnosis to improve treatment outcomes and quality of life for GRN families.
Be a resource link for individuals who are presymptomatic or at risk for FTD due to progranulin.
Support advocacy efforts for policies that promote awareness, early detection, and comprehensive care of FTD-GRN.
Together, we’re stronger, and together, we can change the story of progranulin-related diseases.
join the communityStay informed with the latest updates, research breakthroughs, and upcoming events from the GRN-FTD community.
Genetic Panel at End the Legacy Community Summit
📅
June 6–8, 2025
📍
Conshohocken, PA
🎤
Jary Larsen & Wanda Smith
CureGRN will present on the role of genetic testing in familial ALS/FTD at this community-led event.
CureGRN Research Talk with Dr. Andrew Arrant
📅
May 27, 2025
📍
🎤
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.
National ALS Advocacy Event with Cures Collective
📅
May 7, 2025
📍
Washington, D.C. & Virtual
🎤
CureGRN will participate in this national advocacy event alongside I AM ALS, promoting research funding and awareness for ALS and FTD.
Genetic Familial Panel at AFTD Education Conference
📅
May 1–2, 2025
📍
🎤
Wanda Smith
CureGRN joins the AFTD Education Conference with a session focused on the power of genetic knowledge in familial FTD diagnosis and support.
NINDS ADRD Summit 2025
📅
April 29, April 30, & June 2, 2025
📍
Bethesda, MD & Virtual
🎤
The ADRD Summit, hosted by NINDS, will gather scientific and community stakeholders to shape future research priorities in Alzheimer's disease-related dementias.
The AFTD Registry Presentation
📅
April 22, 2025
📍
🎤
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.
AFTD Social at AAN Annual Meeting
📅
April 7, 2025
📍
Hilton San Diego Bayfront
🎤
CureGRN will attend AFTD’s informal social gathering during the AAN Annual Meeting to connect with researchers, clinicians, and families.
AAN Annual Meeting Panel – Innovation Hub
📅
April 5–9, 2025
📍
American Academy of Neurology Annual Meeting
🎤
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.
The Progranulin Navigator Presentation at BlueField Project
📅
March 4, 2025
📍
🎤
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.
AFTD Holloway Summit 2025
📅
January 22–24, 2025
📍
Mandarin Oriental, Miami, FL
🎤
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.