As a special series for Rare Disease Day (February 28) I decided to put together a presentation about GM1 which is the rare disease that 3 of our 4 children have been affected by. This was meant to educate and give people a basic understanding of all aspects of this disorder and hopefully raise awareness and funds for GM1 research.
The first half of the presentation addresses the following topics: Rare Disease Day – What is GM1? – Symptoms of GM1 – Living with GM1.
The second half of the presentation covers the following topics: Cure GM1 Foundation – GM1 Research/clinical trials – How to seek and give support to families with GM1
Here is our summary video of our experience with GM1 leading up to Rare Disease Day
To help further the progress towards developing treatments for GM1 you can donate to the Nonprofit Cure GM1 Foundation here: https://curegm1.org/