The Vanishing Family

04/09/2026

Pre-order now. Available end of September, 2026.

https://www.instagram.com/p/DV1DBF8FQFm/?igsh=MWh5bXJ1OWZzcmY1Yw==

03/14/2026

Cure MAPT FTD Cure MAPT FTD

Medicaid is changing, and rare disease patients and families need to be prepared. Starting January 2027, some recipients may need to show work, school or volunteer hours to maintain coverage.

Join NORD's webinar where we’ll cover:
✅ How these rules will be rolled out
✅ Our advocacy to ensure uninterrupted access to care
✅ How you can make your voice heard in your state

Don’t navigate this alone. Together we can protect healthcare access for rare patients. Register for the webinar here: https://bit.ly/4daFpFi

12/03/2025

Every dollar donated to Cure MAPT FTD in December is matched one-for-one, up to $15,000. Join the movement today and double your impact.

11/30/2025

💙 This Giving Tuesday, Help Free Families from Genetic FTD

This Giving Tuesday, your gift fuels advocacy and research to stop FTD in its tracks — enabling families to live without this terminal disease haunting generations to come.

Our goal is to raise $50,000 this giving season to help advance Cure MAPT FTD’s critical priorities, namely, to:

- Advocate for MAPT FTD patient access to promising clinical trials
- Expand meaningful connections to the MAPT FTD patient and research community
- Educate families about the importance of genetic testing
- Establish a MAPT-specific registry to help accelerate research
- Share patient and family stories globally to build crucial awareness of MAPT FTD

💙 Donate today to help free families from genetic FTD. And for every dollar given, $1 will be matched, up to $15,000.

🧠 Together, we can break the chains of genetic disease and bring hope where it’s needed most.

11/18/2025

Two weeks until Giving Tuesday — consider an end of year gift to Cure MAPT FTD

We’re already halfway to our $50,000 year-end goal, and every dollar raised will help us amplify MAPT FTD advocacy, genetic testing awareness, global community building, and patient access to clinical trials.

Even better: a generous donor has offered to match all donations through the end of the year, up to $10,000.
This means your impact will be doubled!

Here's how you can help:

🙏🏼Donate on or around Tuesday, December 2 ( )

🥰Start your very own personal fundraising page for Cure MAPT FTD - it only takes 5 minutes to set up.

📣Share & amplify our content over the next 6 weeks

Donate or fundraise here:
https://give.rarevillage.org/campaign/cure-mapt-ftd/c557262

Together, we can create a future free from genetic FTD.

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09/28/2025

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.