Tag Archive for: q&a

Text says 'Lafora Disease Therapeutic Overview presented by Dr. Kit Donohue'

Lafora Disease Therapeutic Overview

We invite you to watch a video and read a page about the Lafora Disease Therapeutic Overview as of August 2023.

Are you wondering if there are future therapy options for Lafora Disease? Also, what treatments are in progress?

At last week’s event, Ask the Experts: A Q&A for Lafora Families, Chelsea’s Hope Science Director, Dr. Kit Donohue, shared an overview of treatment options in the pipeline. We are happy to share a short recording from the Q&A, as well as a PDF page with information from the presentation slideshow.

If you registered for the event, we’ve already sent you the full recording and handout. Make sure to check your email!

We hope the Q&A was informative and that participants could get their questions answered. Our team will work on creating handouts on Lafora Disease stages and on the importance of testing siblings of Lafora Disease patients. Please let us know if there are other resources we can provide to help you navigate living with Lafora.

Finally, Chelsea’s Hope is grateful for any volunteer who can translate materials from English to other languages. We encourage you to fill out the volunteer interest form if you can assist us.

Access the Lafora Disease Therapeutic Overview video captions in English HERE.

Access the transcript in Italian HERE.

Please email Dr. Donohue if you have any follow-up questions from the Q&A.

Text says 'Ask the experts: a q&a for Lafora families' over a white and gray hexagonal background.

Ask the Experts: A Q&A Session for Lafora Families

Families, do you have questions about therapies and treatment for Lafora Disease? You have a chance to ask the experts!

You’re invited…

📌 EVENT: Ask the Experts: A Q&A Session for Lafora Families
📌 DATE: Monday, August 28, 2023 from 3-4:30 pm EST
📌 LOCATION: Zoom. Please register for the meeting link.

Keep reading for more details about the Q&A!!

The Chelsea's Hope Lafora Children Research Fund logo is on the left. Text says 'ask the experts: a Q&A for Lafora Families' on the right.

Please join us on Monday, August 28th, 3:00 – 4:30 pm EST on Zoom. Our Science Director, Dr. Kit Donohue, will overview the current therapies in development for Lafora Disease. Afterward, several of our researchers and clinicians will be available to answer any questions you have about current treatments and medications.
We want to highlight Dr. Viet-Huong Nguyen, a pharmacist with a special interest in Lafora disease, who will be in attendance. Dr. Nguyen is an associate professor at Chapman University whose research interests include epilepsy. She answered questions from families in attendance at the 2022 Lafora Disease Science Symposium and presented at our June Research Roundtable. We are grateful for her to share her wealth of knowledge again with the community!

So, please come with questions! We would love to have you join us. Please register to receive the Zoom link.