Lafora Initiative

10/03/2026

10/03/2026

Honoured that our CEO met with Prime Minister Anthony Albanese today with Sarah and Brett, parents to Charlotte, who has childhood dementia, and her big brother Finn. The Prime Minister has been up since at least 3am but still took the time to hear more about childhood dementia. We were able to update him on the outcomes of research the Australian Government funded on how we can transform care for children and generate savings for our health system and Australia.
Next up, along with experts (and the experts include family members), we'll be speaking with representatives from all sides of government at a special parliamentary briefing with the Parliamentary Friends of Early Childhood.

28/02/2026

Welcome to with Chelsea's Hope Lafora Children Research Fund Thank you RARE Revolution Magazine for this !

Our mission is to improve the lives of those affected by Lafora and help accelerate the development of treatments.

We hope you'll follow along as we spread awareness and hope. ✨

➡️ Learn more: https://chelseashope.org

28/02/2026

Wondering what is Lafora disease?

🧬 It's a neurodegenerative glycogen storage disorder that presents as a progressive myoclonus epilepsy and childhood dementia in adolescents. Please help us spread awareness and understanding.

➡️ Discover more: https://chelseashope.org/about-lafora-disease/


Chelsea's Hope Lafora Children Research Fund

28/02/2026

What fills you with hope? ✨

For us at Chelsea's Hope Lafora Children Research Fund it's the first Lafora safety study/phase 1 trial at UT Southwestern.

Currently, there is no cure for Lafora disease, only palliative care. However, we hope an A*O therapy called ION283 will change that.

The safety study is truly LIFE-CHANGING for the 10 patients enrolled. Pictured here are three patients: Emi, Zaina, and Ty with Dr. Minassian, the investigator leading the study.

It's been a worldwide patient-led effort to fund the clinical costs of this study and we're almost 90% there! 💜

🔗 Learn more: https://givebutter.com/LaforaSafetyStudy

28/02/2026

Let's fill the comments with events in 2026! ⬇️

Our Science Symposium will be in Dallas, Texas, from October 19-21st this year.

We invite caregivers, researchers, clinicians, and industry members to join us!

We'll share registration and more details soon through our mailing list. Sign up here: https://chelseashope.us5.list-manage.com/subscribe?u=ddb4f6c364b22b2e58cc98fd2&id=568c9b99f6


Chelsea's Hope Lafora Children Research Fund

28/02/2026

The biggest THANK YOU to RARE Revolution Magazine for this ! Stay connected with us on our journey to . 💜

Get involved: https://chelseashope.org/get-involved/

Chelsea's Hope Lafora Children Research Fund

28/02/2026

🦓 RARE DISEASE DAY!

We are proud to support this day of awareness, education, and uniting as a worldwide community.

You can make a difference today by supporting a potential treatment for ! Lafora is an ultra-rare genetic disorder that leads to symptoms of epilepsy and childhood dementia. There is no cure, and it is fatal.

We are changing that!

There are multiple Lafora therapies in pre-clinical stages, and one is being tested for safety and efficacy, for which we are fundraising to support the remaining clinical costs.

10 children from around the world are participating in the trial in Dallas, Texas. We only have approximately $160k to raise of the total $1.5 million budget, so any gift will truly help us close the gap!

👉 Give here to change lives: https://givebutter.com/LaforaSafetyStudy

Thanks for your generosity! 💜

01/10/2025

What fills you with hope?

For us at Chelsea's Hope Lafora Children Research Fund it's the first Lafora safety study/phase 1 trial at UT Southwestern.

Currently, there is no cure for Lafora disease, only palliative care. However, we hope an A*O therapy called ION283 will change that. It is the first therapy designed for Lafora patients that has received FDA approval for an investigator-led safety study, doubling as a Phase 1 Clinical Trial. Dr. Minassian and his team are hard at work!

There will be 10 patients enrolled; we are 80% fully funded.

It's been a worldwide patient-led effort to fund the clinical costs of this study and we need your help to close the gap! Please share the news. Together, we can change lives.

🔗 Learn more: https://givebutter.com/LaforaSafetyStudy

13/07/2025

Almost 3 years ago. Ange wanted you all to help her In her honor I will continue to fight until we have a cure! No child should suffer like this. Continue to help us make these changes. We are so close now.
Learn more by visiting Chelsea's Hope Lafora Children Research Fund

This month we are acknowledging for all the kiddos that are suffering from Lafora Disease right now.
Angelina has been fighting for 4 years and it’s been an incredibly exhausting journey as many times she has been close to death, has lost all her independence and not had the opportunity to take advantage of all her dreams and goals.
Instead she struggles daily to and have some sort of a normal life. What is normal would you say? Is staying home all day being entertained by her family and nurses a life? Is being too ill to do anything independently a life? Is knowing you can have a seizure at any time comforting? Is not being able to call or message a friend depressing? It sure is…yet she continues to fight 💪🏻 She’s a strong cookie who inspires me (her mother) to find a way to change her life or at least try because if you don’t try, you will never know.

This month (and every month, who are we kidding here) we support in all their hard work to bring us families together, fund research, create awareness and find a cure endlessly for beautiful precious teens like Angelina.

For this who don’t know, Lafora Disease is a degenerative neurological condition affecting children. It is terminal and there is no cure. Perfectly healthy children first show symptoms in their early teens and typically die within 10 years.

Here is Ange showing her support as she wants to live!

Go to Chelsea’s Hope Lafora Children Research Fund to learn how help head on, as no child should face their own death!

13/07/2025

After years of heartbreak, Lafora disease families are fueling glycogen storage research breakthroughs, helping develop therapies that may treat not only Lafora but other related neurological disorders.
https://www.asbmb.org/asbmb-today

• Image description: Scanning electron micrograph of a Lafora body, an insoluble glygogen aggregate, that can form in the brain, heart, skin and other peripheral tissues of patients with Lafora disease.
• Credit: M. Kathryn Brewer, University of Florida