Article I did for the Spastic Paraplegia Foundation pro bono outlining the current state of research into a rare disease similar to ALS -
When my two-year-old daughter, Brianna, was diagnosed in 2010, it seemed like a cure for HSP might just be around the corner: New genes were being discovered all the time, great strides were (and still are) being made in understanding of how the neural pathways involved in making muscles move actually work, stems cells were being held out as a potential treatment option and so on.
Yet, six years on, it feels like we are no closer to treatment, let alone a cure. And, in some ways, those feelings are valid. For all its miracles, medical research moves very slowly, very deliberatively. There are good reasons for this. Even the most promising therapies rarely make it past the third round of clinical trials. The human body is a massively complicated machine and when you try to affect just one very small part of it, like a motor neuron, without affecting all the other parts, it is very, very difficult to do.
First the good news. Researchers working on hereditary spastic paraplegia, better known as HSP, know more today than ever before. They are uncovering new linkages between the proteins that are at the heart of the disorder all the time.