Chelsea’s Hope supports Purple Day 2024

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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.

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Last updated August 2026. L I V I N G W I T H L A F O R A A N T I - S E I Z U R E M E D I C A T I O N G U I D E L I N E S Expert opinion from Lafora Clinical Working Group, Chaired by Dr. Roberto Michelucci. Lafora disease is a rare and progressive form of epilepsy, and families are often told early on that seizure control will require more than one medication and ongoing adjustment over time. This expert opinion summarizes the discussion and survey results from a clinical working group of physicians experienced in treating Lafora disease. It is intended to give families a starting point for discussion with their own healthcare providers. Disclaimer: This article reflects the opinions and survey responses of a clinical working group and is shared for general informational purposes only. It is not medical advice and should not replace guidance from your own healthcare provider. Please review this information with your doctor before making any changes to a treatment plan. ANTI-SEIZURE MEDICATIONS FAVORED FOR LAFORA DISEASE When managing seizures in Lafora disease, clinicians routinely combine multiple anti- seizure medications (ASMs). When selecting which medications to combine for a patient, the clinician considers the efficacy of each drug, as well as the potential side effects. They will also take into account possible drug-drug interactions, the age of the patient, their weight and mental health. Therefore, seizure management may look very different for each patient, which is why it is important to consult with your personal physician. However, the clinical working group determined that the following medications are most commonly used as first-line treatments: Levetiracetam, valproic acid, and perampanel are typically the first medications prescribed for newly diagnosed patients Clonazepam is frequently used in everyday treatment plans, largely for its effect on myoclonus. It is also commonly used as a rescue medication when symptoms worsen Brivaracetam, topiramate, and zonisamide are frequently added to a seizure treatment regimen, often to help reduce myoclonus Phenytoin may be useful for short-term treatment of status epilepticus, but it is not recommended for long-term, chronic use MEDICATIONS GENERALLY AVOIDED IN LAFORA DISEASE Certain Anti-seizure medications, like sodium-channel blockers, are usually avoided because they can worsen myoclonus or fail to control seizures effectively. Some examples include: Carbamazepine Phenytoin (becomes a problem with chronic, ongoing use) Lamotrigine Gabaergic drugs Most anti-focal ASMs PLANNING FOR EMERGENCIES Status epilepticus, prolonged or repeated seizure that doesn't stop on its own, is a medical emergency. Clinicians most commonly reported the use of clonazepam or midazolam as first-line emergency treatment, sometimes followed by levetiracetam, brivaracetam, perampanel, or valproic acid or phenytoin in refractory cases. Every family should have a written seizure action plan in place. This helps ensure that emergency responders and caregivers know what to expect and how to respond, and may help avoid unnecessary ICU admissions. chelseashope.org | info@chelseashope.org | @chelseashopelaforacure | Chelsea’s Hope, 976 Maywick Dr. Lexington, KY 40504Chelsea's Hope Lafora Children Research FundGene Therapy 101
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
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Last updated August 2026. L I V I N G W I T H L A F O R A A N T I - S E I Z U R E M E D I C A T I O N G U I D E L I N E S Expert opinion from Lafora Clinical Working Group, Chaired by Dr. Roberto Michelucci. Lafora disease is a rare and progressive form of epilepsy, and families are often told early on that seizure control will require more than one medication and ongoing adjustment over time. This expert opinion summarizes the discussion and survey results from a clinical working group of physicians experienced in treating Lafora disease. It is intended to give families a starting point for discussion with their own healthcare providers. Disclaimer: This article reflects the opinions and survey responses of a clinical working group and is shared for general informational purposes only. It is not medical advice and should not replace guidance from your own healthcare provider. Please review this information with your doctor before making any changes to a treatment plan. ANTI-SEIZURE MEDICATIONS FAVORED FOR LAFORA DISEASE When managing seizures in Lafora disease, clinicians routinely combine multiple anti- seizure medications (ASMs). When selecting which medications to combine for a patient, the clinician considers the efficacy of each drug, as well as the potential side effects. They will also take into account possible drug-drug interactions, the age of the patient, their weight and mental health. Therefore, seizure management may look very different for each patient, which is why it is important to consult with your personal physician. However, the clinical working group determined that the following medications are most commonly used as first-line treatments: Levetiracetam, valproic acid, and perampanel are typically the first medications prescribed for newly diagnosed patients Clonazepam is frequently used in everyday treatment plans, largely for its effect on myoclonus. It is also commonly used as a rescue medication when symptoms worsen Brivaracetam, topiramate, and zonisamide are frequently added to a seizure treatment regimen, often to help reduce myoclonus Phenytoin may be useful for short-term treatment of status epilepticus, but it is not recommended for long-term, chronic use MEDICATIONS GENERALLY AVOIDED IN LAFORA DISEASE Certain Anti-seizure medications, like sodium-channel blockers, are usually avoided because they can worsen myoclonus or fail to control seizures effectively. Some examples include: Carbamazepine Phenytoin (becomes a problem with chronic, ongoing use) Lamotrigine Gabaergic drugs Most anti-focal ASMs PLANNING FOR EMERGENCIES Status epilepticus, prolonged or repeated seizure that doesn't stop on its own, is a medical emergency. Clinicians most commonly reported the use of clonazepam or midazolam as first-line emergency treatment, sometimes followed by levetiracetam, brivaracetam, perampanel, or valproic acid or phenytoin in refractory cases. Every family should have a written seizure action plan in place. This helps ensure that emergency responders and caregivers know what to expect and how to respond, and may help avoid unnecessary ICU admissions. chelseashope.org | info@chelseashope.org | @chelseashopelaforacure | Chelsea’s Hope, 976 Maywick Dr. Lexington, KY 40504Chelsea's Hope Lafora Children Research FundNew Resource: Lafora Anti-Seizure Medication Guidelines
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