Tag Archive for: childhood dementia

Courage in Care: Lafora Caregiver Series Connection and Care: Childhood Dementia Presented By Kaitlin Baum, RN

Protected: Connection in Care

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The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

FACE It to Raise Awareness of Childhood Dementia

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Chelsea’s Hope joins the Childhood Dementia Initiative (CDI) in recognizing next Wednesday, September 17, 2025, as Childhood Dementia Day. We will join the FACE It awareness campaign to make childhood dementia impossible to ignore. 2025 is the third year that Chelsea’s Hope is participating in the movement. We invite you to join us!

The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

Did you know that Lafora is one of hundreds of genetic conditions that cause childhood dementia? It is devastating. We need more attention and support to reach treatments, improve outcomes, and save lives.
That’s why we’re joining the Childhood Dementia Initiative‘s #FaceIt campaign to spread awareness that children get dementia, too.

View a childhood dementia fact sheet HERE.

Join us in a casual Zoom on September 17th from 9-10 AM PDT and help us raise awareness of childhood dementia. We invite you to join the Zoom call with your face colorful and impossible to ignore, or paint it as your art activity during our virtual meet-up. At the end, we’ll take a group photo for anyone who wants to participate. Together, we’ll draw attention to childhood dementia.

I’m in!
The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

Chelsea’s Hope Joins FACE It 2024

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Wednesday, September 18th, is Childhood Dementia Day, and we’ve joined the FACE It awareness push to make childhood dementia impossible to ignore. 2024 is the second year Chelsea’s Hope is participating in the movement. We invite you to join us!

The Childhood Dementia Initiative (CDI) started the FACE It campaign to raise awareness of childhood dementia, which so many people don’t know exists.

What is childhood dementia?

We see what dementia does to our loved ones with Lafora disease. Most people associate the life-altering symptoms of dementia with older people, but according to our friends at CDI, more than 100 genetic conditions cause dementia in childhood. The prognosis for children with childhood dementia is dire: 50% die before the age of 10, and 70% before reaching adulthood. All will die prematurely. View a childhood dementia fact sheet HERE.

The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.


On September 18th, we invite you to make your face impossible to ignore! Join the fun with face paint, makeup, or a filter before posting to social media. Together, we’ll draw attention to childhood dementia and fight Lafora disease.

Be sure to send Chelsea’s Hope your photos or tag us if you want us to feature you on our social media. Use the hashtags #ChildhoodDementia and #FACEit to join. You can also check out CDI’s FACE it kit with tips and resources to raise awareness.

So, will you join the movement?

I’m in!
The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

FACE it Campaign

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The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

On September 20th, 2023, Chelsea’s Hope will be joining Childhood Dementia Initiative in the FACE It campaign! September 20th is Childhood Dementia Day, meaning it’s the perfect opportunity to make childhood dementia Impossible To Ignore. We invite you to join by painting your face or having fun with make up. Together, we’ll draw attention to childhood dementia.

One of the most pressing issues regarding childhood dementia is that many people don’t know that it exists. It is a symptom of Lafora disease that eventually affects every patient, listed with others on our About Lafora Disease page. Childhood dementia affects an estimated 700,000 people, and sadly, most children with dementia pass away before their 18th birthday.

In the rare disease community, opportunities to share with friends, acquaintances, and peers outside of the community can be crucial. According to Dementia Australia, childhood dementia is caused by more than 100 different rare genetic conditions.

Spreading awareness helps families, researchers, and medical professionals in supporting patients and developing a cure.

Check out the Chelsea’s Hope social media accounts on September 20th, a.k.a. Childhood Dementia Day; we’ll share photos of us FACING it to raise awareness. Learn more about the FACE It campaign on Childhood Dementia Initiative’s web page.

Download our poster to share