Childhood Dementia Initiative

Today we make childhood dementia impossible to ignore. Childhood dementia may be more common than you realise. It’s caused by over 140 genetic conditions that damage the brain and nervous system. 
One in every 2,900 babies is born with a childhood dementia condition. Half will die before the age of 10, most won’t live to adulthood. Awareness is the first step to making childhood dementia a health priority.

5 months ago | [YT] | 33

Childhood Dementia Initiative

Ange’s legacy will live on and her memory will drive us every day. #childhooddementia #lafora #Angelina

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8 months ago | [YT] | 301

Childhood Dementia Initiative

Find more answers to frequently asked questions here: www.childhooddementia.org/what-is-childhood-dement…

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1 year ago | [YT] | 13

Childhood Dementia Initiative

You may remember Angelina from this video: https://youtu.be/MUWhJ_PrlyA Her mum has asked us to share this update. She knows many people want to know how Ange is doing.

1 year ago | [YT] | 8

Childhood Dementia Initiative

Impossible to ignore! That’s what we’re making childhood dementia: impossible to ignore. Please join in. It’s easy. Make your face colourful and share a photo with the hashtags #FaceIt #ChildhoodDementia on Childhood Dementia Day, WED SEPT 18.
Register now for more info and resources: www.childhooddementia.org/faceit
#DementiaAwareness #TimeForChange #Facepaint #Colour #Impact #AwarenessMatters #Awareness

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1 year ago | [YT] | 9

Childhood Dementia Initiative

Please join the global FACE it awareness push on Childhood Dementia Day, Sept 18 2024. Register now at: www.childhooddementia.org/faceit

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1 year ago | [YT] | 35

Childhood Dementia Initiative

Brief 10-min survey: we're seeking health & care professionals with experience working with kids with dementia. Please share your first-hand insights into care & support to help us identify areas for improvement: bit.ly/3xGs7hy

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1 year ago | [YT] | 11

Childhood Dementia Initiative

There's more info here: regenerative-medicine.ed.ac.uk/news/latest-news/ne…

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1 year ago | [YT] | 97

Childhood Dementia Initiative

It’s easy to participate: a 10-minute survey with an optional interview. More information is here:
www.childhooddementia.org/news/insight-research
Not sure if your child’s genetic condition is considered a childhood dementia? View a list of 100+ conditions here: www.childhooddementia.org/childhood-dementia-disor…
Examples of conditions that cause childhood dementia: Batten disease, Sanfilippo syndrome, Niemann-Pick disease A & C, Tay-Sachs disease, metachromatic leukodystrophy, Rett syndrome and some mitochondrial disorders.
#childhooddementia #research #livedexperience #parents #primarycarers #dementia #dementiaresearch #neurodegenerative #geneticdisorder #carers #batten #sanfilippo #Niemannpick #taysachs #RettSyndrome #mitochondrialdisease

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1 year ago (edited) | [YT] | 14

Childhood Dementia Initiative

One of the questions we often get is 'how do you end childhood dementia?'. The answer: research to find cures and treatments. You might be surprised by how little research has been directed to help kids with dementia. In our latest upload Dr Kristina Elvidge speaks about the research inequity uncovered by a new analysis of global clinical trials. Dr Elvidge also speaks to some of the immense opportunities for change. We can turn this around! Join our webinar with a global expert panel on 24 April: bit.ly/3TPcTxR 
Watch Dr Elvidge here: https://youtu.be/fuLxxeeRv4Y #childhooddementia #research #inequity #clinicaltrials

1 year ago (edited) | [YT] | 5