Headshot of Camilla Bozzi

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

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

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

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 supports #EpilepsyDay 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. 

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!

Image includes a purple rectangle in the background of top third. The Chelsea's Hope Lafora Children Research Fund research roundtable logo is towards the left of the rectangle in white. It has half a bullseye to the left of the text. To the right of the logo's text is a purple line. On the other side, white text says 'Thursday, 8 February 10:30 AM - 12 PM EST.' a darket purple line separates the purple background from the white hexagons that make up the rest of the image. Below that, white text on a purple oval says 'REGISTER IN ADVANCE.' The photo on the left is a headshot of Sharmistha Mitra, Ph.D. with text beneath her name that says 'UT Southwestern Medical Center.' The photo on the right is a headshot of Jeff Milton with text beneath his name that says 'La Jolla Labs, Inc.'

Announcing February Research Roundtable Speakers

Dr. Mitra and Jeff Milton to Join Chelsea’s Hope Lafora Disease Research Roundtable on 8 February

Image includes two round photos, with the Chelsea's Hope Lafora Children Research Fund research roundtable logo in the center. It has half a bullseye to the left of the text. A line is beneath. Text says 'Thursday, 8 February 10:30 AM - 12 PM EST' beneath the line. Below that, white text on a purple oval says 'REGISTER IN ADVANCE.' The photo on the left is a headshot of Sharmistha Mitra, Ph.D. with text beneath her name that says 'UT Southwestern Medical Center.' The photo on the right is a headshot of Jeff Milton with text beneath his name that says 'La Jolla Labs, Inc.' The background of the image is white hexagons.

We are excited to announce the two speakers that will present at our February research roundtable.

Sharmistha Mitra, Ph.D., is an Instructor in the Department of Pediatrics, Division of Child Neurology at UT Southwestern Medical Center. She joined the UT Southwestern faculty in July 2020.

Dr. Mitra’s objective is to present a comparative murine study of the amylopectinoses of APBD, Lafora Disease, and PGBM1 at the roundtable. She will share a mechanistic understanding of the function of E3 ubiquitin ligases and their associated proteins in glycogen metabolism.

Jeff Milton is the Founder and CEO of La Jolla Labs, a company developing technology for RNA therapeutics. Prior to this, he was Head of Data Sciences at Arcturus Therapeutics, where he worked on several rare disease programs, including both RNA-targeting and mRNA modalities. Jeff currently serves as an advisor to his alma mater, the Mellon College of Science at Carnegie Mellon University.

We are excited to begin the 2024 Research Roundtable series and hope you will join us for an important conversation.

Our Next Research Roundtable

Please join us Thursday, February 8th, from 10:30 am – 12:00 pm EST to learn from Jeff and Dr. Mitra. You must register for the Zoom meeting in advance. We will include a new translation and captions feature for the Zoom meeting. It will not be recorded, although we will share a summary after the meeting.