Tag Archive for: families

Lafora Disease Centers of Excellence Listening Sessions

Invitation to Join Listening Sessions

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Families and caregivers, you might have seen in our July newsletter that we need your help to establish criteria for Centers of Excellence for treating Lafora disease.

As an ultra-rare disease, most hospitals do not know what resources are needed in order to provide the best possible care for our children with Lafora. By establishing guidelines for Centers of Excellence, we can provide a set of recommendations for treating Lafora patients and recognize hospitals that provide exemplary care for our children with Lafora.

We invite you to join us at one of the listening sessions in August to share your advice on what support you receive (or need) from your care facility. There are currently four sessions scheduled; please sign up for the session with the time and language that works best for you.

Listening Sessions

August 1: English (but all languages welcome)
Join Jenifer at 10 AM Pacific Daylight Time. >

August 8: Hindi/English
Join Vaishali at 7:30 PM India Standard Time. >

August 15: Spanish
Join Nancy at 10 AM Eastern Daylight Time. >

August 25: Italian
Join Giuseppe at 7 PM Central European Summer Time. >

Together, we can advocate for better care. By recognizing locations with expertise, we can learn from their practices and improve worldwide treatment options for Lafora patients.

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

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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.
REGISTER NOW