Progranulin Information Navigator

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.

05/27/2026

When you're navigating FTD, finding people who truly understand changes everything. Erynn Gordon, our Genetic Counselor and Program Manager, shares her reflections from the AFTD Education Conference — on community, connection, and the hope emerging through progranulin research and clinical trials. Read the full blog 💜
https://www.progranulinnavigator.org/resources/reflections-on-the-aftd-education-conference

Reflections from the AFTD Education Conference on the power of community, genetic FTD, and the hope emerging through progranulin research and clinical trials.

05/05/2026

We wrapped up a meaningful few days at the AFTD 2026 Education Conference in Seattle last week. 🙌

𝐓𝐡𝐞 𝐇𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬:
🌟 Rich conversations and research updates on genetic forms of FTD
🌟 Connecting with the incredible FTD community — patients, care partners, and researchers all in one room
🌟 Meeting folks who learned about genetic testing for the first time at this conference

Filling that gap — making genetic counseling and testing accessible — is at the heart of what we do, and moments like these remind us why it matters.

Thank you to everyone who visited our booth. Until next time! 💙

04/29/2026

We're excited to announce that we'll be sponsoring and exhibiting at the AFTD 2026 Education Conference!
📅April 30 – May 1, 2026
📍 Seattle, WA & Online

This is an incredible opportunity to connect with the FTD community, share resources, and support the mission of navigating FTD together. Come visit us at our booth!

04/27/2026

"𝐂𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐭𝐫𝐢𝐚𝐥𝐬 𝐜𝐡𝐚𝐧𝐠𝐞 𝐥𝐢𝐯𝐞𝐬 𝐟𝐨𝐫 𝐠𝐞𝐧𝐞𝐫𝐚𝐭𝐢𝐨𝐧𝐬." — 𝘞𝘢𝘯𝘥𝘢 𝘚𝘮𝘪𝘵𝘩

In her testimonial, Wanda shares why clinical trials and genetic counseling matter so much for families impacted by FTD and the 𝘎𝘙𝘕 (progranulin) mutation.
Progress starts with participation. 🧠

Watch Now: https://www.progranulinnavigator.org/resources/it-changes-lives-for-generations-why-clinical-trials-and-genetic-testing-matter-for-ftd

Cure GRN-FTD

In this video, Wanda Smith shares her family's journey with frontotemporal dementia (FTD) and the GRN genetic mutation — including her mother's years-long misdiagnosis and what it meant to finally have answers. Wanda reflects on why genetic counseling and clinical trial participation matter, not j...

04/25/2026

🧬 Happy National DNA Day!
For the FTD community, DNA Day hits close to home. Mutations in the 𝘎𝘙𝘕 gene reduce Progranulin — a protein essential to brain health — and are one of the leading genetic causes of frontotemporal dementia (FTD).
Because we know the gene, we have a target. And researchers are working every day to reach it. 💜
Join us in moving the needle — whether through clinical trial participation, supporting research, or simply spreading awareness. Every action counts.
🔗 Learn more about FTD research and how to get involved: https://www.progranulinnavigator.org/

04/20/2026

We're live at 2026! 🧠💜

Stop by booth #1230 and say hello to our very own Erynn Gordon Fishman! We're here through Wednesday talking about the Progranulin Information Navigator— offering free genetic counseling and testing for FTD patients.

Did you know 15–20% of FTD cases are genetic? Come learn more. 👇

https://www.progranulinnavigator.org/

04/20/2026

🧠 We're proud to be a sponsor and exhibitor at the 2026 AAN Annual Meeting in Chicago this week!

Events like this bring the neurology community together — driving awareness, advancing research, and improving lives. We're honored to be part of it.

Come find us at the exhibit hall! 💜

04/17/2026

Whether your result was positive, negative, or uncertain — you are not alone, and there are clear next steps ahead.

Our latest blog walks you through what your results might mean and how to move forward with confidence.

📌 What's inside:
→ What a positive, negative, or uncertain result means for you
→ How your results may affect family members
→ How to explore clinical trials and care planning
→ Free access to a genetic counselor through Progranulin Information Navigator

Your results are just one step in the journey — not the whole story.

Read the full blog here: https://www.progranulinnavigator.org/resources/you-got-your-genetic-test-results--now-what

Navigate the latest in Frontotemporal Degeneration (FTD) research. Access genetic testing, find clinical trials, and connect with vital resources through the Progranulin Navigator.