Tag Archive for: Awareness

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

/by

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!

Raise Awareness for Lafora Disease on Lafora Body Disease Day 2023

/by

Help us reach a cure #FightLafora #LaforaBodyDiseaseDay

Share how you #FightLafora on October 1, 2023, our third annual Lafora Body Disease Day, and raise awareness about Lafora Disease!

Creating awareness is key to more research, better support, and a brighter future for our kids with Lafora Disease. Keep reading to find out how you can join in.

We invite you to create awareness on October 1 by sharing your story, the stories of the Children of Chelsea’s Hope, educational posts, or encouraging others to watch the recent Fighting the Rare documentary. Check out our social media toolkit for ideas!!

This October 1, we’ll also be celebrating ICD-10 code G40.C, so there is a lot we can share about as a community online. You can also join the #FightLafora social media challenge or contact your local news networks. Families, please contact us if you would like support in sharing your story with press outlets.

Chelsea’s Hope began recognizing October 1 as Lafora Body Disease Day in 2021. This year would have been Chelsea’s 33rd birthday. She continues to inspire the work we do, including raising awareness about Lafora Disease.


#FightLafora Social Media Challenge

One way to raise awareness on Lafora Body Disease Day 2023, or anytime after, is to join the #FightLafora social media challenge. We love seeing how you’ve used the hashtag on your posts over the past year and try to reshare what we can!

Want to join? Here are the steps:
1. Write #FightLafora
2. Take a photo
3. Share it on your social media

+ you can also tag three friends to join the challenge to create awareness about Lafora.

Creating awareness about Lafora is one step to achieving our mission of improving the lives of those affected by the devastating rare disease and helping to accelerate the development of treatments. Thank you for raising your voice. Together, we can fight Lafora!

Lafora Body Disease Day 2023 Social Media Toolkit