Who are beat4life?
We are the parents of Fletcher and Daniel and on the 1st October 2014 we launched an online campaign called beat4life.
Our first project aimed to raise $51KUS ($58KAUS) over 30 days in October 2014 so that a vital drug trial could commence in February 2015. This initial project used an on line crowd funding platform called Pozible which to start with looked to raise $30K AUS. This would make up part of the money needed to fund the research. Due to the success of the campaign beat4life moved the target with a view to fully funding the $58K AUS trial which it achieved. beat4life will continue to raise funds for further phases of this research.
beat4life Mission and Goals?
The short term goal is to raise enough money to fund Dr Anne Bang of the Sanford-Burnham Institute to complete vital and exciting research into drug treatment for children with LMNA related congenital muscular dystrophy or L-CMD. In funding this research we hope that Fletcher and Daniel heart’s may benefit from the protective effects of a drug treatment. The first phase of this research has now been funded by beat4life and work will begin in February 2015. Because this disease is so rare, it is up to the families to raise the required funds until we have made enough progress that one of the pharmaceutical companies will take an interest.
The long term goal is to raise awareness into all congenital muscular dystrophies hopefully leading to better community awareness and interest. Gaining the support of major drug companies who can help fund further research and eventually drug trials in the hope to finding a cure before it is too late for children like Daniel and Fletch