Patient and advocate with LGMD2B Dysferlinopathy
I was diagnosed with Limb Girdle type 2B Dysferlinopathy in 2010. I have been very keen to do everything I can to support research teams with the vital work that they do. Since the early stages of my diagnosis have believed strongly that if a treatment or cure is to be found then we must do what we can to fully assist those who undertake that noble and vital work, fully aware that I may never “rest in the shade of the tree we planted” but hopeful someday, others will. I have been a participant in the COC study since the start of it and will continue to seek opportunities to help to find treatments, understanding and therapies for these diseases.