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Tag Archive for: purple day 2024

Chelsea’s Hope supports Purple Day 2024

March 26, 2024/by Christine Kelly

Purple Day - March 26 www.purpleday.orgIn unity with worldwide epilepsy advocates, Chelsea’s Hope has pledged its support for World Purple Day 2024. Epilepsy advocate Cassidy Megan founded the international initiative to raise awareness about epilepsy. Today, on March 26, people wear purple to show solidarity with those affected and support advocacy efforts. 

Approximately 50 million people live with epilepsy globally, including Lafora Disease warriors. An extremely rare epilepsy, Lafora is complex and has limited treatment options. Symptoms of the disease, also known as Lafora progressive myoclonus epilepsy, include increasingly recurrent, intractable seizures and myoclonus. 

Chelsea’s Hope remains committed to improving the lives of those affected by Lafora Disease. Accordingly, the organization has shared social media advocacy tools to raise awareness about the unique challenges of Lafora, as well as links to other organizations and support that families could benefit from on our Resources page. 

If you join in sharing on social media, then here are some caption ideas: 

💁‍♀️ Share about who you wear purple for.

💬 Explain some facts, like how Lafora Disease is often misdiagnosed as Juvenile Myoclonic Epilepsy.

🧠 Describe symptoms of Lafora, like recurrent seizures.

Purple Day is an opportunity for education and empathy for all affected by epilepsy, including Lafora patients and their loved ones. Together, we can work towards a future where epilepsy is better understood and all individuals receive the support and care they deserve. Together, we fight Lafora.

https://chelseashope.org/wp-content/uploads/2024/03/Purple-Day-2024-Featured-Image.png 628 1200 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2024-03-26 08:10:312024-03-26 08:10:31Chelsea’s Hope supports Purple Day 2024

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

  • New Resource: Lafora Anti-Seizure Medication Guidelines

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  • Student Ambassador Applications Open

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  • Elpida Therapeutics’ Press Release

  • ION283 to be Developed by Elpida Therapeutics

  • Update on the ION283 Program from Telethon

  • Introducing the Lafora Clinical Network Registry

  • Meet our 2026 Summer Interns!

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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