News & Blog

The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

FACE it Campaign

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The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

On September 20th, 2023, Chelsea’s Hope will be joining Childhood Dementia Initiative in the FACE It campaign! September 20th is Childhood Dementia Day, meaning it’s the perfect opportunity to make childhood dementia Impossible To Ignore. We invite you to join by painting your face or having fun with make up. Together, we’ll draw attention to childhood dementia.

One of the most pressing issues regarding childhood dementia is that many people don’t know that it exists. It is a symptom of Lafora disease that eventually affects every patient, listed with others on our About Lafora Disease page. Childhood dementia affects an estimated 700,000 people, and sadly, most children with dementia pass away before their 18th birthday.

In the rare disease community, opportunities to share with friends, acquaintances, and peers outside of the community can be crucial. According to Dementia Australia, childhood dementia is caused by more than 100 different rare genetic conditions.

Spreading awareness helps families, researchers, and medical professionals in supporting patients and developing a cure.

Check out the Chelsea’s Hope social media accounts on September 20th, a.k.a. Childhood Dementia Day; we’ll share photos of us FACING it to raise awareness. Learn more about the FACE It campaign on Childhood Dementia Initiative’s web page.

Download our poster to share
Text says 'Lafora Disease Therapeutic Overview presented by Dr. Kit Donohue'

Lafora Disease Therapeutic Overview

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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!

Watch Lafora Disease Therapeutic Overview on YouTube

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.

Download Therapeutic Overview PDF
Title text on the left says 'upcoming webinars.' Below is a bullet point list of text that says 'Childhood Dementia Introduction Tue. 5th September 10:30 - 11:30 pm EST Accessing Emerging Treatments for Childhood Dementia Thu. 7th September 6 - 6:45 pm EST We Don't Fit Report Tue. 10th October 9:30 - 10:30 pm EST.' On the right text says 'hosted by: Childhood Dementia Intiative. Colorful ovals are in the top right corner and the Chelsea's Hope Lafora Children Research Fund logo is in the bottom right corner.

Childhood Dementia Webinars

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The background is mostly white with gray hexagons. Title text on the left says 'upcoming webinars.' Below is a bullet point list of text that says 'Childhood Dementia Introduction Tue. 5th September 10:30 - 11:30 pm EST Accessing Emerging Treatments for Childhood Dementia Thu. 7th September 6 - 6:45 pm EST We Don't Fit Report Tue. 10th October 9:30 - 10:30 pm EST.' On the right text says 'hosted by: Childhood Dementia Intiative. Colorful ovals are in the top right corner and the Chelsea's Hope Lafora Children Research Fund logo is in the bottom right corner.

Our friends at Childhood Dementia Initiative are hosting three childhood dementia webinars we want to let you know about!

1. Childhood Dementia Introduction

Tuesday, 5th September 2023 from 10:30 – 11:30 pm EST

Register now


2. Accessing Emerging Treatments for Childhood Dementia

Thursday, 7th September from 6 – 6:45 pm EST

Register now


3. We Don’t Fit Report

Tuesday, 10th October from 9:30 – 10:30 pm EST

Register now


Why attend?

Dementia is one of many symptoms of Lafora Disease. These free webinars could benefit families and caregivers, though healthcare providers, researchers, and advocates who attend could better understand childhood dementia.

Please note: Childhood Dementia Initiative is located in Australia, but the events automatically show up in your timezone when you view the session details. We know the last webinar will conflict with our 2023 Lafora Disease Science Symposium, but wanted to pass along the information if you are signed up to get virtual recordings of the Symposium and available on October 10 to learn about CDI’s report.

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