Context
Labrune Syndrome/LCC (“Leukoencephalopathy, Cerebral Calcifications, and Cysts”) is an ultra-rare, progressive neurological disease with no FDA-approved treatment and limited awareness in the medical community.
First, LCC is a devastating disease that causes brain calcifications, cysts, and progressive neurological decline. Very little research exists, which means that doctors have limited knowledge and there are no standardized treatment protocols. Without funding, clinical trials will not happen, leaving families without hope for therapeutic options.
Moreover, families affected by LCC often struggle to find knowledgeable doctors, obtain an accurate diagnosis, and access appropriate medical care. Many caregivers feel alone, without a support system or guidance to manage their child’s symptoms. The financial burden is overwhelming, whether for medical expenses, specialized equipment or travel for care.
We need to accelerate research to find effective treatments and, ultimately, a cure, and provide resources and contacts to ease these challenges and empower families.
Goals
To create a future where those diagnosed with LCC/Labrune Syndrome have hope, better care, and, one day, a cure.
Activities
- Research funding and support: providing financial support and collaborating with scientists to drive research into LCC/Labrune Syndrome, focusing on understanding disease mechanisms, potential drug targets, and therapeutic development;
- Family Support: offering affected families direct assistance through information and connections to specialists.
Myriad Canada is working with The LCC Foundation on this project, a nonprofit whose mission is to support families affected by LCC across the United States and globally, and to provide resources to help fight this rare and debilitating disease. The Foundation focuses on funding research projects aimed at discovering novel treatments, therapies, and ultimately a cure for LCC. It also strives to raise awareness about LCC, to improve the chances of early diagnosis and intervention.
Myriad Canada’s role is to carry out charitable projects across the globe in accordance with its charitable purposes. We control and monitor the use of funds and the progress of charitable activities to ensure that donations made to Myriad Canada have the greatest impact in accordance with donors’ expressed wishes. As a member of the Myriad Alliance with offices in Canada, the US, Europe, Asia and Australia, Myriad Canada has a vast international network and extensive practical expertise.
How to support this project?
By credit card: At the top right of this page, indicate the amount you wish to donate, and make the donation online by credit card. You will receive a receipt for tax purposes by e-mail just a few minutes after making the donation. It is simple and quick!
By cheque:
- Make your cheque out to Myriad Canada.
- IMPORTANT NOTE: We receive a lot of cheques! You must please indicate “Project G413 – Supporting LCC research and affected families” in the memo line of your cheque to ensure that it is allocated correctly.
- Mail your cheque to: Myriad Canada, 1 Place Ville Marie, Suite 1670, Montreal, QC, H3B 2B6, Canada.
By Direct Deposit:
- For transfer instructions, please email or call Caroline Chaulet: caroline@myriadcanada.org or +1 438 300 8122.
For Donation of Securities:
- Please email or call Caroline Chaulet: caroline@myriadcanada.org or +1 438 300 8122.
For Monthly Donations:
- We use CanadaHelps. Please find the link here.
If you need any assistance, please do not hesitate to contact us.
All donations are eligible for a tax receipt in Canada.
The projects are managed with the greatest care and professionalism.