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
This is a graphic with a headshot of Niki Markou smiling in the center. The background is a purple gradient.

Director of Family Support Announcement

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This is a photo of Niki Markou, new Director of Family Support, smiling.Chelsea’s Hope Welcomes First Director of Family Support

We are thrilled to announce our first Director of Family Support is Niki Markou.

She will be responsible for helping to successfully plan, implement, and continually improve Chelsea’s Hope’s support, registry coordination, and patient community support programs. We created this new role to better serve our mission of improving the lives of those affected by Lafora Disease.

Meet the Team

You might know Niki from the Fighting the Rare documentary or her advocacy work. She is a powerful force in the Lafora Disease community! She has served as Marketing and Communications Director on the Board since she joined Chelsea’s Hope in 2020. Her daughter Angelina is the only patient diagnosed with Lafora Disease in Australia, and Niki frequently shares their story to raise awareness with news media, our partner organizations, and via Lafora Initiative.

She is a passionate advocate for her daughter, other Lafora disease patients, and the rare disease community. We hope you will join us in congratulating Niki on her new position! We are grateful for her commitment to improving the lives of those affected by Lafora and advancing the mission of Chelsea’s Hope.

Rare Genomes Project logo on top of a purple to white gradient

Rare Genomes Project

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This is the Rare Genomes Project logo. To the left is a small orange r that flows into a blue g. Lowercase text reading rare is in orange to the right while blue text reads genomes project below it.As part of our collaboration with CZI through the Rare as One Network, suspected Lafora disease patients and their families in the U.S. have access to genetic testing through the Rare Genomes Project.

Rare Genomes Project Offers Free Genetic Testing for Rare Disease Families in the U.S.

We know you have likely already experienced a confirmed Lafora disease diagnosis for one of your loved ones or patients. However, please feel free to share this resource with those who might be in need of genetic testing. The diagnostic odyssey for rare disease patients is too long and we are grateful this program will help reduce it.

“The Rare Genomes Project…at the Broad Institute of MIT and Harvard is a patient-driven research study led by genomics experts and clinicians who believe that the latest advances in genomic sequencing are changing medicine and should be accessible to families with rare and undiagnosed conditions.” 

We encourage you to view their brochure and flyer! You can find out more information about eligibility and apply for testing on their website.

Website Request brochure View flyer