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Chelsea’s Hope supports Purple Day 2024

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.

This image has a purple background photo of a purple stethoscope and purple ribbon. White text says 'We support' then purple text on a semi-transparent white background says '#EpilepsyDay.' Below, white text says '12 February, 2024.' The Epilepsy Day logo on a white circle is beneath all the text. The white Chelsea's Hope Lafora Children Research Fund logo is in the bottom right hand corner.

Epilepsy Day and SAP 2024

Chelsea’s Hope Supports Epilepsy Day and Seizure Action Plan Awareness Week 2024

This image has a purple background photo of a purple stethoscope and purple ribbon. White text says 'We support' then purple text on a semi-transparent white background says '#EpilepsyDay.' Below, white text says '12 February, 2024.' The Epilepsy Day logo on a white circle is beneath all the text. The white Chelsea's Hope Lafora Children Research Fund logo is in the bottom right hand corner. Chelsea’s Hope proudly supported Epilepsy Day on Monday, February 12, 2024.

This International Epilepsy Day, we joined in raising awareness on social media, including sharing facts about Lafora progressive myoclonus epilepsy. For example…

Did you know? 

  • Seizures in adolescence are one of the first symptoms of Lafora Disease.
  • Lafora Disease is commonly misdiagnosed as Juvenile Myoclonic Epilepsy.
  • Lafora Disease symptoms include recurrent, increasingly intractable seizures.
  • Lafora Disease symptoms include muscle jerks and spasms, also called myoclonus.

We educated new audiences across platforms about Lafora Disease and will continue to do so beyond Epilepsy Day. Chelsea’s Hope believes raising awareness about Lafora will lead to better funding, support, and opportunities for all those affected by the rare epilepsy. We invite you to join and have resources available to help your advocacy efforts. 

Chelsea’s Hope also signed the Epilepsy Action Network letter to President Biden, requesting increased federal investment for epilepsy research.

Seizure Action Plan Awareness Week 2024

SEIZURE ACTION PLAN AWARENESS WEEK February 12-19, 2024. The SAP SEIZURE ACTION PLAN COALITION logo is in the bottom center of the image. #SAPAW2024 SeizureActionPlans.org

Epilepsy Day has kicked off seizure action plan (SAP) awareness week, February 12-19, 2024! Since Lafora symptoms include seizures, having a plan in place with tailored guidelines on how others can respond could create comfort and reduce complications in an emergency situation.

Educate and empower your family and friends to respond if your loved one has a seizure. It’s never too late to develop a SAP with your Lafora patient’s care team and healthcare provider! Visit https://seizureactionplans.org/ to get started. You can also join the SAP coalition in raising awareness through social media!