It’s that time of the year, the 2010’s are history and this year we’re looking into a new decade. As the clock steadily slides towards the end of ’19, we get an opportunity to reflect on last year and simultaneously look ahead and set our intentions for the time to…

Although I’m writing this for anyone interested in the topic above, I’m also writing this in the context of a side-effect from a chemo-therapy. After being on a medication for a while to slow down tumor growth, I got to experience the so-called “chemo-brain”, a common side effect for patients that receive a therapy like this. 12 months in, I derived some behavioral practices I use personally – on- or off therapy. Let me know how you’re dealing with your foggy-brains in the comments below!

What’s going on?

A few years ago I got diagnosed with a genetic disease that causes brain and spinal tumors. I’ve started my own genetic research project, a rare disease research company and I’m now working with the patient- and research community on the next challenges in developing therapies.

Onno speaking at an event

The initial research lead…

Boonsri Srinivasan created a mini-documentary of the NF2 Hackathon event we organized in San Francisco – called “Hacking a Cure”. If you weren’t there, the video gives you a taste of the atmosphere and level of commitment everybody has to work on finding better solutions for a rare disease. Read more about the event here.

This short documentary is about NF2 patient Onno Faber (also an entrepreneur), who organized a hackathon to find better treatment options using his genetic data. Over 100 machine learning experts and scientists gathered over a weekend and presented their projects at the end of the 48 hour event – Boonsri Srinivasan

Onno Faber

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