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Raise Awareness for Lafora Disease on Lafora Body Disease Day 2023

September 28, 2023/by Christine Kelly

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
4. Tag Chelsea’s Hope Lafora Children Research Fund or DM us your photo!

+ 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
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https://chelseashope.org/wp-content/uploads/2023/09/English.png 1080 1080 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-09-28 12:18:172023-09-28 12:20:38Raise Awareness for Lafora Disease on Lafora Body Disease Day 2023
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About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope.

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. [Read More]

View Chelsea’s Hope Newsletter Archive 

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Latest News

  • Press Release: United Against Lafora, Families Worldwide Raise Awareness

  • New Resource: Lafora Anti-Seizure Medication Guidelines

  • Join in Lafora Body Disease Day 2026!

  • Lafora Therapy Q&A Resources

  • Student Ambassador Applications Open

  • Social Security Added Lafora to Compassionate Allowances List

  • Elpida Therapeutics’ Press Release

  • ION283 to be Developed by Elpida Therapeutics

  • Update on the ION283 Program from Telethon

  • Introducing the Lafora Clinical Network Registry

The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 nonprofit organization. EIN: 27-1008382

Location imageChelsea’s Hope c/o Dr. Donohue

976 Maywick Dr.

Lexington, KY 40504

info@chelseashope.org

Use ICD-10 code G40.C for Lafora.

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Link to: Announcing ICD-10 Codes for Lafora Disease Link to: Announcing ICD-10 Codes for Lafora Disease Announcing ICD-10 Codes for Lafora DiseaseNew ICD-10 Code G40.C Lafora progressive myoclonus epilepsy Effective October 1, 2023 Providers, please use the new ICD-10 code for Lafora disease. Link to: Board Secretary Announcement Link to: Board Secretary Announcement Headshot of Meredith Williams in business dress, smiling.Board Secretary Announcement
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