I believe there has never been a more exciting time in ALS science. The creativity that comes with looking at problems from different angles, collaboratively, and with unprecedented advances in technology, gives justified cause for hope.
I have heard more than once that ALS is not an incurable disease, just an underfunded one. That truism, when combined with the avalanche of ideas in the scientific world of this fight calls for commensurate creativity in the world of support.
This past week, Dr. Andrew Lo, Prof. and Director of the Center of Financial Engineering at MIT, presented to a group of educated and interested listeners in Greenwich on his unique theory around funding the research and therapy development in the fights against rare and devastating diseases. He uses a hedge fund model to not only sustainably support large numbers of projects, but deliver a profit for investors. The group that gathered out of friendship to hear Dr. Lo learned of a way to do real good using a creative approach.
His explanation is far more articulate than mine. Please find below the link to a talk he gave on this model – in this case, funding cancer research.
Link to Dr. Lo’s talk.
In the century that ALS has been an official diagnosis, more progress in the science has been made in the last three years than in the prior 97. There is no coincidence that about three years ago the ALS ice bucket challenge brought worldwide attention and support, roughly $200 million, to this work.
I cannot think of a more compelling reason to bring a keen focus on the opportunities for science and support. I am so grateful for the hearts and minds of the people involved in both.