It is a parents worst nightmare when they find out their child is sick or has a disease of some kind. Our son Ryan was diagnosed with Hereditary Spastic Paraplegia at the age of two. The disease is an inherited, degenerative disease affecting mainly the legs, causing spasticity, muscle weakness and severely impairing walking.Once inherited the disease can affect a human at any stage in life and I have been very fortunate to be able to do some amazing things with full use of my legs. Unfortunately in Ryan's case and many others families cases he may miss the opportunity to experience some of the activities that a able bodied child/adult may be able to achieve. We have been introduced to the HSP Research Foundation which has been built to assist with the knowledge and treatment of the disease but also to investigate for possible cures. The current phase of research - Testing & Selecting Therapeutic Drug Candidates for treating HSP - began in early 2013. Two promising candidate drugs are being investigated to determine their suitability for undertaking clinical trials. The current drug investigations are being carried out with nasal HSP stem cells. Two new validation studies have now commenced, one with HSP mice and the other with human HSP neurons derived from a different type of stem cell – induced pluripotent stem cells.
Success with any drug candidate in these 3 separate investigations will make a very strong case for taking the drug candidate into human clinical trials to test its potential to be an effective treatment for HSP. Plans are underway to make application for, and seek approval for human clinical trials in early 2016.
With the funding for these drug validation studies now secure, the attention turns to funding the development of a database / registry of HSPers and the establishment costs in making clinical drug trials a reality. These costs are huge and there is no way we can meet them all, but it is essential that we play our part and do our best. It is for this reason that I would like as many people to donate and raise funds to this worthy cause.
I am intending to swim from Cottesloe beach in Perth across to Rottnest Island which is approximately 19.5km if you swim straight !
The training involved is upwards of 30km per week and with the possibility of sea sickness, jellyfish stings, hypothermia, and the home for the largest population of Great White sharks in the world. I am sure that we can raise some good funds to go towards this worthy cause. A possible cure for Ryan and many other people around the world. Please give generously ! Australia is leading the world with research in this disease. Remember the donation is also a taxable deduction !