Tag Archive for: Awareness

Join in Lafora Body Disease Day 2026!

/by

It’s that time of year again! We recognize October 1, 2026, as Lafora Body Disease Day.

Chelsea’s Hope will raise awareness to support children fighting for their lives, find answers for families feeling overwhelmed, and accelerate the development of treatments.

We need your participation to make it a success! Creating awareness is key to more research, better support, and a brighter future for families facing Lafora disease. Keep reading for resources and ways to get involved.

Awareness Video

We want to make a “United against Lafora” awareness video, including families, patients, and organizations who can participate from around the world.

If you can join, please email us a short video where you say “United against Lafora” in your language. Include your name and country in the email. Chelsea’s Hope will edit a compilation video and share it publicly on October 1st.

We want as many nationalities and voices represented as possible, but so it doesn’t get too long, we will update this post with those already shared as we receive submissions: Palestine, Slovakia, Bahrain, United States, Poland, Italy, France.

If your nationality is already represented, don’t worry! There are many other ways to join in raising awareness…

Other Ways to Raise Awareness

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 Fighting the Rare documentary. 

Families, we encourage you to contact your local news networks to see if they will feature your story. You can email us if you would like support in sharing your story with press outlets.
We invite everyone to join the #FightLafora social media challenge…

#FightLafora Social Media Challenge

One way to raise awareness on Lafora Body Disease Day 2026 is to join the #FightLafora social media challenge. We love seeing how you’ve used the hashtag on your posts and will reshare what we can!

Want to join? Here are the steps:
1. Write “United against Lafora” in your language (this can be holding up a sign, by creating a painting, on the side of your coffee cup…)
2. Take a photo (bonus if you’re wearing purple or your Chelsea’s Hope gear)
3. Share it on your social media
4. Tag us or DM us your photo! Use #FightLafora

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


Coffee for Chelsea’s Hope Fundraiser

October 1st is also International Coffee Day, which is why we have a unique fundraiser this year: Coffee for Chelsea’s Hope.

We are asking supporters near and far to donate the amount of your typical drink to advance our mission. Your $5 gift (or $10, we see you, Venti lovers) might not cost you much, but will make a big impact for our cause.

The campaign will run from September 24-October 8, 2026. We will have a special coffee lovers’ giveaway for supporters on October 9, too! 

Finally, you can host your own Coffee for Chelsea’s Hope fundraiser by clicking that “Fundraise” button on our campaign. One idea is bringing coffee into your break room at your office and asking for donations for every cup. Another idea for college students is tabling on your campus. Email us with any questions, and we will be happy to support your fundraiser however we can. Join here!

This annual effort to raise awareness about Lafora is one step toward 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!

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

/by

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

/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