I SUPPORT RARE DISEASE DAY 29 FEB 2024 #RAREDISEASEDAY RAREDISEASEDAY.ORG

Rare Disease Day 2024 Press Release

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SHINING A LIGHT ON LAFORA DISEASE IN GAZA, GLOBALLY

Chelsea’s Hope will raise awareness about Lafora on Rare Disease Day 2024.

SACRAMENTO, Calif. – February 28, 2024 – Chelsea’s Hope Lafora Children Research Fund, a 501(c)(3) nonprofit organization, joins the global rare disease community to advocate for patients like 17-year-old Zaina in Gaza and raise awareness about Lafora on the rarest day of the year – February 29, 2024.

Lafora Disease is a neurodegenerative condition affecting an estimated 200 children worldwide. It is a genetic condition in which patients cannot maintain a normal glycogen concentration, resulting in a toxic accumulation of glycogen, or Lafora Bodies, in the heart, spine, and brain. Symptoms include ataxia, childhood dementia, cognitive decline, and difficulty speaking, walking, and eating.

Zaina was diagnosed with the ultra-rare epilepsy at the age of 13. A stellar student, Zaina applied herself to physical, occupational, and speech therapy just as she had in school. She relied on medication to manage her seizures and lost the ability to speak and move because of her Lafora symptoms.

Currently, Zaina is surrounded by violence and destruction in Gaza. The hospital where she received treatment is no longer operable, and her family has evacuated their home and moved across Gaza several times to escape the fighting. Chelsea’s Hope has remained in contact with her mother, Doaa, since October 8. The worldwide Lafora community has shared their story and supports the family however we can.

“There is nothing in pharmacies…There is no clean place here… Everything is bad… Anyone who can help us and follow Zaina’s topic, please,” shared Doaa.

While Zaina’s Lafora story is similar to other children, she is experiencing extraordinary conditions compared to other patients. This Rare Disease Day, join us in raising awareness. Donate to this GoFundMe to help her family evacuate Gaza.

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Headshot of Camilla Bozzi

Volunteer Spotlight: Camilla Translated Six Lafora Disease Resources from English to Italian

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Headshot of Camilla BozziChelsea’s Hope is grateful to announce that volunteer Camilla Bozzi has translated six Lafora Disease resources from English to Italian. The documents will help families access support, educational resources about Lafora, and updates on research.

We had the pleasure of meeting Camilla at the 2023 Lafora Disease Science Symposium in Bologna. She applied to volunteer after learning about the experiences of Lafora families and wanting to help in any way possible. A skilled Italian translator, she’s worked diligently on these six Lafora Disease resources:

Camilla shared, “If I am able to help even one person, one family, connect with the wonderful community behind Chelsea’s Hope, I know I did a good job!”

The team at Chelsea’s Hope is very grateful for the translation assistance. While our site uses Google Translate, we recognize our PDFs and other educational resources are difficult to access for the entire Lafora community. The organization remains committed to translating more of our resources in the future.

Support translation efforts

We are accepting applications for volunteers to translate the same and future documents from English to other languages. Not interested in volunteering? You can still help by sharing about our cause with your networks.

This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2024 Candid.'

Chelsea’s Hope Earns 2024 Platinum Seal of Transparency

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This is the Platinum Seal of Transparency from Candid. It has a platinum border, white square center, and text that says 'Platinum Transparency 2024 Candid.'Chelsea’s Hope is thrilled to announce we’ve just earned a Platinum Seal of Transparency from Candid for 2024!

We are excited to share the work our nonprofit does through our Candid nonprofit profile, and we invite you to view it and keep up to date with our impact. We shared information about our mission, programs, results, financials, and operations.

Chelsea’s Hope wants to ensure you have the progress updates you need to support our work with trust and confidence. Your contributions make our work to reach a cure for Lafora Disease possible. When you donate, know we continue to operate with the highest level of transparency. Our Platinum Seal is a testament to our commitment to our donors and community.

What’s next? 

In 2024, we plan to host two more Research Roundtables and the Lafora Disease Science Symposium. We will also coordinate discussion and fund a consensus document for biomarkers and treatment of Lafora Disease. As always, we will support the amazing Lafora researchers and industry partners as they do the incredible work of developing treatments for our children.

Thank you for supporting our mission of improving the lives of those affected by Lafora Disease and helping accelerate the development of treatments.

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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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!