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Cure MAPT FTD

@curemaptftd.bsky.social

Our mission: raise awareness of the MAPT genetic mutation; assist a global network of families; and advocate for trials that will cure MAPT FTD.

33 Posts139 Follower137 Folgt
Cure MAPT FTD@curemaptftd.bsky.social · 2mo ago

In the following weeks and months, thanks to a grant from the Kissick Family Foundation, we will be explaining what FTD is; its symptoms; and what frontline healthcare workers, especially those in Georgia and Florida, can do once they are confronted with a set of confusing symptoms. #ftd #fl #ga

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Cure MAPT FTD@curemaptftd.bsky.social · 11mo ago

MAPT FTD is inherited in an autosomal dominant pattern, meaning if one parent has a MAPT gene, each child has a 50% chance of inheriting it. Almost everyone with the gene will develop symptoms (full penetrance), usually between ages 40-60. In rare cases, onset can be later or never happen at all

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Cure MAPT FTD@curemaptftd.bsky.social · 11mo ago

FTD Genes cause different symptoms: MAPT → Changes personality first. Loss of social skills, repetitive behaviors. GRN → Often causes depression/anxiety first, plus movement problems. May affect speech. C9orf72 → Often overlaps with ALS, causing apathy and memory impairment.

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FTD Disorders Registry@ftdregistry.bsky.social · last yr.

The Registry joined representatives from Cure GRN, @curemaptftd.bsky.social, Cure VCP, & the Progranulin Information Navigator for a visit to @pennftdc.bsky.social. It was a powerful reminder of how research & community collaboration are driving progress to #EndFTD. ftdregistry.org/press/inside...

Inside the Penn FTD Center - FTD Disorders Registry

The FTD Disorders Registry joined FTD community advocates for a behind-the-scenes tour of the Penn FTD Center,

ftdregistry.org