Support Groups & Mailing Lists


Our Facebook Support Group is one of the most active parts of the whole project. With individuals posting daily out of over 100 affected families from all around the world, there is always something to read! The FB group has become a "Bridge Over Troubled Water for people with this condition" says regular poster Angie from Alabama. We have many discussions to sink your teeth into surrounding Minicore Myopathy, tips and advice on all sorts of matters, life in general, personal celebrations shared within the group and regular updates on project events and fundraisers.