[mtwalsh01]

The neurodegenerative disease Amyotrophic Lateral Sclerosis, or Motor Neuron Disease (MND), has been in the news in the last week. The team behind project MinE, a major genetic research project into ALS, have founded a for-profit investment fund aimed at targeting a marketable cure for ALS. To this end, the fund founders, who all have ALS themselves, are hosting an ALS investors day on May 19th 2014 in the offices of their sponsor Accenture in Amsterdam. The group are hoping to raise €100 million from so-called ‘impact investors’. These are investors who invest in projects designed to cause social or environmental improvements, while also expecting a return on their investment.

ALS is a rare but devastating disease for which no cure currently exists. It is characterised by loss of essential voluntary muscle activity such as speaking, walking, breathing, and swallowing and ultimately leads to paralysis and death. Motor neurons, which under normal circumstances control muscles, lose the ability to relay signals from the brain to the muscles.

For most rare diseases, mainly basic scientific research is performed without regard to the possibilities of making a profit. Most research is carried out and accumulated in academic institutions. This limits successful translational research due to lack of know-how in bringing discoveries to the market. The co-founder of the investment fund Bernard Muller, who is nominated as EY entrepreneur of the year in the Netherlands, explains that their proposal marries the ideas of bringing hope to patients with return on investment to investors: "Our latest initiative - we already successfully launched the biggest global genetic research study ever, called project MinE - will enable us to show the potential impact of a truly meaningful investment that will bring hope to patients without ignoring the demand from investors for a return on their investment and it will also bring cost savings for health insurers as well as real translational research and shared scientific success."

The founders will reveal the blueprint for their approach to finding a marketable cure at the ALS investors’ day. There they will seek funding from and create sound investment opportunities for investors outside the traditional pool of biotech investors, while feeding directly into the ALS treatment pipeline to give hope to the thousands of patients who currently have no cure.

Elsewhere, further hope was offered to ALS patients when the FDA in the USA cleared the Israeli biotech company BrainStorm Cell Therapeutics to advance a stem cell therapy for ALS into Phase II. The trial will be carried out in Massachusetts General Hospital. Stem cell manipulation will be carried out in designated cleanrooms at the nearby Dana-Farber Cancer Institute.

Sources
Press release: Project MinE, available at http://www.prnewswire.co.uk/news-release...22921.html

Website: http://www.alsinvestorsday.org

http://www.fiercebiotech.com/