Progranulin Information Navigator

10/04/2026

This week, you learned about a disease most people have never heard of. You know the signs, who it affects, how long a diagnosis can take, and what it means for families. The simplest thing you can do now is share what you've learned. One conversation can help someone recognize the signs sooner. To learn more or find support, visit https://www.progranulinnavigator.org/.

Day 7 of 7.

10/03/2026

For some families, FTD isn't a single diagnosis. It's a shared history. Studies suggest studies suggest around 40% of people with FTD have a family history of the disease, and in some families it's caused by a known gene. That's why genetic counseling and research matter so much: they help families understand their risk and bring us closer to treatments. Day 6 of 7.

10/02/2026

FTD doesn't only affect the person diagnosed. Because it changes personality and behavior, families often watch someone they love become hard to recognize, while still caring for them every day. Caregivers carry a heavy emotional and practical load, often while still working and raising children. Awareness helps families feel less alone. Day 5 of 7.

10/01/2026

The Wait. On average, it takes 3.6 years for someone with frontotemporal degeneration to receive an accurate diagnosis. For many families, those are years of slowly losing a loved one, without understanding what’s happening. They are years spent without answers, without the right care, and without the chance to plan ahead. When more people recognize the signs of FTD, including doctors, employers, and loved ones, that wait gets shorter. Day 4 of 7.

09/30/2026

Dementia is often thought of as a disease of old age. FTD is different. It most often strikes between the ages of 45 and 64, when people are still working, raising families, and planning for the future. That's also why early signs of this psychiatric disease are so easily mistaken for stress, burnout, or a midlife crisis. Day 3 of 7.

09/30/2026

When most people think of dementia, they think of memory loss. FTD usually looks different. Early signs are often changes in personality, behavior, or language, which is one reason it's so often missed or misdiagnosed. Day 2 of 7.

09/28/2026

Frontotemporal degeneration (FTD) affects an estimated 50,000–60,000 people in the U.S., yet most people have never heard of it. This week, we're sharing one thing to know each day. Day 1 starts here.

07/17/2026

Yesterday marked 20 years since scientists discovered that changes in the GRN gene cause frontotemporal dementia (FTD) — a breakthrough that gave countless families an answer they didn't have before, after years of uncertainty.

Since that 2006 discovery, we've gone from not even knowing that GRN was one of the common causes of genetic FTD to having multiple clinical trials underway, testing gene therapy and protein-replacement approaches designed to restore progranulin levels in the brain.

There's still no approved treatment for GRN-FTD — but we are closer than ever, and it's all thanks to the families who shared their stories and participated in research along the way. 💛
📖 Take a look back at how far we've come, and where the science is headed next: https://www.progranulinnavigator.org/resources/twenty-years-of-progress-looking-back-on-the-discovery-of-the-progranulin-grn-gene

06/29/2026

Ever wondered what the difference is between an observational study 👁 and an interventional study 💊?
Research can feel overwhelming on top of an FTD diagnosis, but it doesn't have to be.
Our latest blog breaks down the two main types of research studies and how each one is paving the way for today’s progranulin-related FTD trials.
💡There's no right or wrong choice. Just informed ones.
Learn More: https://www.progranulinnavigator.org/resources/two-ways-research-helps-fight-ftd-observational-vs-interventional-studies

Learn how observational and interventional studies advance FTD research and treatment development for progranulin-related frontotemporal dementia.