The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. EIN: 27-1008382
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
June Research Roundtable Registration
/by Christine KellyWhen? It will be Thursday, June 22, 2023, from 10:30 am – 12:00 pm EST.
Where? The Roundtable will be virtual. You can register to attend via Zoom!
We will be hearing from experts on clinical markers in Lafora Disease. Like the April Roundtable, there will be presentations and ideally time for discussion at the end.
Families are welcome to attend and ask questions, so we hope you will be able to join us for this event! We recommend that you refer to Science Terms 101 if you are not a researcher or clinician attending. It’s full of helpful definitions of scientific terms you might hear. You can download the PDF and print it out for your reference!
The Roundtable is only one month away, so register today!
Also, please register if you are interested but you are unsure if you can attend or not! We will email a summary of the Roundtable to everyone who registered. It will also be posted on our Research Roundtable page.
Chelsea’s Hope is excited about our June Research Roundtable. Please contact us if you have any questions.
Lafora Disease Science Terms 101
/by Christine KellyWe’ve just published the helpful PDF filled with Lafora Disease Science Terms that you can download for your own use or to share.
Our community benefits from a number of dedicated research champions who work alongside our families to find a cure for this devastating disease. There is a lot that we can learn about Lafora disease from our scientists. As you read their scientific publications and listen to their presentations, please refer to the Science Terms 101 publication for terms that will help you understand their research.
Lafora Bodies
For example:
Glycogen: When our bodies have extra sugar (glucose), they store it in the form of glycogen, which is made up of a bunch of sugars linked together. Our bodies use sugars to make fuel for our cells (the way that gasoline or electricity fuel a car). When your body needs energy quickly, it can remove the sugar from this storage device and use it for fuel.
Protein-Coding Gene: A piece of DNA that contains instructions for synthesizing a protein. Patients with Lafora Disease have mutations in one of two genes:
1. EPM2A: the gene with instructions for making the protein laforin.
2. EPM2B (also called NHLRC1): the gene with instructions for making the protein malin.
Besides glycogen and proteins, Lafora Disease Science Terms 101 includes definitions for biomarkers, knock-in and knock-out mouse models, and more! Get your copy today.
Thank you to Chelsea’s Hope Science Director Dr. Kit Donohue, for defining the terms.
First Lafora Disease Research Roundtable
/by Christine KellyWhen? It will be Thursday, April 27th, 10:30 am – 12:00 pm EST.
Where? The Roundtable will be virtual. You can register to attend via Zoom!
We’ll bring together Lafora Disease and Adult Polyglucosan Body Disease researchers around a common goal: reducing glycogen aggregation in the brain. The Research Roundtable will feature several presentations, followed by time for group discussion.
The presentations will be geared toward the science community as we work to build allies toward developing treatments for Lafora disease, but everyone is welcome. Families are welcome to attend and ask questions, so we hope you will be able to join us for this event!
It’s only one week away, so register today for the Lafora Disease Research Roundtable!
Also, please register if you are interested but you are unsure if you can attend or not! We hope to send the Zoom recording of the roundtable to everyone who signed up. However, we will not make the recording available publicly.
Chelsea’s Hope is excited for our first Research Roundtable. If successful, we plan to continue the series in the future. Please contact us before the roundtable if you have any questions.
Chelsea’s Hope Started a Volunteer Program
/by Christine KellyWe’re looking for the best kind of people: volunteers. Join a network dedicated to curing Lafora disease.
We’re excited to announce the launch of our volunteer program!! Please check out our new volunteer page and fill out the volunteer interest form to join the volunteer network.
Please spread the word that Chelsea’s Hope started a volunteer program! Share it with your friends and family, because we can do more together.