The Vanishing Family

09/24/2025

If you’re worried that frontotemporal dementia (FTD) might run in your family, you are not alone – and there are steps you can take.

💙Start with your family history
If a close relative had FTD (or symptoms of dementia, ALS, or unexplained cognitive changes at a younger age), genetic FTD may be a possibility.

💙Talk to your doctor
Bring up your family history with a neurologist or primary care provider. Ask whether a referral to a genetic counselor makes sense.

💙See a genetic counselor
Genetic counselors can explain the risks, what testing can and can’t tell you, and the emotional and financial aspects. They also guide you in deciding whether testing is right for you.

💙Get reliable testing
If you and your counselor decide to move forward, they can order testing for the known FTD genes (like MAPT, GRN, or C9orf72). To assure accurate results, testing should be through CLIA-certified labs, not consumer DNA kits.

No-cost genetic testing and counseling for FTD is available through several programs in the US, such as InformedDNA and research initiatives like ALLFTD and Probably Genetic.

💙Connect with support
Waiting for results (or getting them) can be overwhelming. There are FTD advocacy groups and research networks that offer community, resources, and hope.

Remember: getting tested is a personal choice. No one should go through it without support.

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For more resources and information about how to get genetic testing, go to https://www.curemaptftd.org/en/support-resources or https://www.theaftd.org/ftd-genetics/genetics-no-cost/
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09/23/2025

🧬 Genetic FTD: Not All the Same

Three main genes cause different symptoms:

MAPT (avg. age of onset: 44-54) → Changes personality first. Loss of social skills, repetitive behaviors. Starts youngest.

GRN (progranulin) (avg. age of onset: 56-65) → Often causes depression/anxiety first, plus movement problems like stiff limbs. May affect speech.

C9orf72 (avg. age of onset: 50-65) → Often overlaps with ALS, causing motor symptoms, apathy and memory impairment.

Rarer genes add unique features:
VCP → Muscle weakness + bone disease (Paget's) + dementia combo
CHMP2B → Personality and behavior changes accompany sweet food cravings, putting non-food items in mouth
TBK1 → Memory problems early, often mistaken for Alzheimer's

Early recognition helps families: Knowing the specific gene can guide genetic counseling, family planning decisions, clinical trial participation, and help relatives understand their own risk. Behavioral FTD is genetic 40-45% of the time, making family screening important.

Each gene affects the brain differently, which is why symptoms vary so much between families.

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Ready to take action? Find your community and join the fight for a cure with these FTD advocacy organizations: The Association for Frontotemporal Degeneration , CureGRN , Cure MAPT FTD , Cure VCP Disease , Genetic ALS & FTD: End the Legacy

09/22/2025

🧠 What if it's FTD? This , we're asking the world to recognize the signs that often get missed.

The Reality:
Genetic FTD affects 1.8-4.4 people per 100,000 worldwide
Around 40% of all FTD cases have a strong family history, but even with NO family history,

09/21/2025

Listen to the real stories of families with FTD. 💙

This we’re asking - What if it’s FTD?

FTD often strikes in your 40s, 50s, or 60s — when you’re working, parenting, or even building a career.

We encourage all FTD families to share their stories this week - just as the FDA Listening Session Speakers share their stories here. We’re in this together 💙

Find your community and join the fight for a cure with these FTD advocacy organizations: The Association for Frontotemporal Degeneration, CureGRN, Cure MAPT FTD, 💙

Together, we're stronger.

05/04/2025

Love to see families affected by the MAPT gene sharing their stories. Our stories bring us together, and through sharing we find common ground, inspiration, meaning, hope and ACTION.

03/07/2025

Cure MAPT FTD has been granted a patient listening session with the U.S. FDA on May 23, 2025! We will be presenting data about the FTD patient community's preferences related to clinical trials and therapy development. If you are a member of the MAPT FTD patient community (including family members and care partners), please fill out this survey. Thank you for helping to make our FDA Patient Listening Session a success.

12/25/2024

Thank you to the The New York Times for featuring Linde LJ, Cure MAPT FTD and our quest for a cure for familial FTD caused by MAPT genetic mutations on the of today's paper! And thank you to Virginia Hughes for capturing Linde's struggle and bravery so elegantly.

Cure MAPT FTD raises awareness of the MAPT genetic mutation causing FTD, assists a global network of MAPT families, and advocates for trials that will lead to a cure.

12/22/2024

Don't miss this The New York Times article about a true MAPT FTD warrior, Linde LJ, who is fighting day and night for a for .

A mutant gene is coming to steal Linde Jacobs’s mind. Can she find a way to stop it?

12/05/2024

We could not be more excited about this announcement by Switch Therapeutics.

"By the end of 2024, Switch anticipates naming its second development candidate, targeting production of tau, which is directly responsible for neurodegenerative diseases called tauopathies, including primary and secondary tauopathies such as progressive supranuclear palsy and Alzheimer’s disease, among others. Switch’s MAPT program knocks down tau at the genetic level, thus preventing intra-cellular tau production."

https://www.switchthera.com/news/switch-therapeutics-appoints-david-m-holtzman-m-d-to-its-scientific-advisory-board-and-announces-its-first-development-candidate-casi-apoe-a-liver-sparing-apoe-rnai-therapy/

Cure MAPT FTD

Biotech expert and renowned Alzheimer’s disease researcher, David M. Holtzman, M.D., joins Switch’s Scientific Advisory Board to support advancement of company’s novel neurodegenerative pipeline…