Join Our Cure GRN
‍ Community

“The virtual meet and greets held by CureGRN, I met people who shared my fears and frustrations of worrying about family members who might carry the progranulin gene.”

“CureGRN’s work feels like a bridge n between where we are now and a future where this disease doesn’t call the shots.”

“CureGRN Helps families better understand what they are facing with GRN-FTD and links us to resources to help navigate this disease.”

S. Thompson

“CureGRN has been a lifeline for me. Finding out my mother had GRN-FTD , I felt isolated, like I was carrying this heavy, confusing burden alone. Having CureGRN changed that.”

W. Smith

“Updates on research hosted by CureGRN gave me clarity about what I am facing, cutting through the medical jargon.”

Anonymous

“Being connected to CureGRN gives me access to the latest and greatest news on the GRN research front. I like to know what's happening and how my family can get involved to move science forward. Many family members in our group are involved in observational and interventional trials and it's so helpful to have these people as a resource.”

Mike B.

“The GRN community has been a breath of fresh air! It keeps me updated on the hopeful research, connects me with other families in a similar situation and reminds me I'm not alone!”

Betsy Hall

“I am very new to the group but connecting with people who truly understand the impact of this disease and are motivated to find a cure and proper supports is life changing. I feel less alone and more hopeful.”

Nico C.

“I love the sense of community in this very rare corner of genetic diseases. The guest speakers keep us up to date and provide answers about the current research and resources.”

“I love the warm, supportive, and welcoming environment from a community who not only understands FTD, but understands being part of a family dealing with it genetically. It is a great place to connect, learn, and share resources.”

Jacquelyn Shapiro

“When my husband was first diagnosed with GRN FTD, I knew no other family impacted by such a terrible disease. Now that I'm connected to this community, I no longer feel so alone and have partners in the fight to cure grn ftd.”

SteveC

“This community is a great resource for finding out about the latest research and clinical trials for those affected by FTD, from those already diagnosed, to family members, to caregivers.”

Connect and Share

Progranulin and the AFT Community

At CureGRN, we’re more than a website—we’re a family. Whether you’re newly diagnosed, a caregiver, or simply curious, our community is here. Join us to:

Connect

Share your story and hear from others through our Zoom Meet and Greet Calls and our WhatsApp group.

Learn

Get the latest on progranulin research and treatment updates.

Act

Help us raise awareness and push for solutions together.

Get Involved

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Progranulin Information Navigator

The Progranulin Information Navigator, created by the Bluefield Project to Cure FTD, was developed to help improve access to information about clinical trials for GRN-FTD, and to provide access to free genetic counseling and testing.

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FTD Disorders Registry

The FTD Disorders Registry (Registry) is a non-profit resource designed to facilitate research and accelerate the development of treatments by providing resources that:

Promote & support research participation
Enable access and sharing of data with researchers
Amplify the voice of the patients’ and families’ lived experience.

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Association for Frontotemporal Degeneration (AFTD)

The Association for Frontotemporal Degeneration (AFTD) is the leading nonprofit devoted to helping families affected by FTD today, and driving research to foster accurate diagnosis, treatments, and a cure.

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Join Our Cure GRN ‍ Community

Progranulin and the AFT Community

Connect

Learn

Act

Join Us

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Join Our Cure GRN
‍ Community