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 come. Even though we can do this at any given moment of any day, for me this has been a yearly ritual. And this year is special, because in addition to the year, we get a chance to look ahead into the entire 2020’s. The projects we need to embark on, both as individuals as well as a species, often have longer timelines anyway. For example, we have an opportunity to improve our environment towards sustainability, enhance our healthcare system and therapeutics for all humankind, or strengthen the relationships in our personal life. …

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The time has come for us to say goodbye to Tapstack. Apps like Tapstack are very hard to get off the ground and although we tried very hard, unfortunately we haven’t been able to build a sustainable business around it. However, we have had an incredible journey, and I know from all the user’s stories over the years that we’ve helped people feel closer and more connected – and that has always been our goal. If you’re curious why we built and love the app, please continue reading below. We’re shutting down the Tapstack service the 15th of November.

Download your saved Taps

If you are a Tapstack user you can download all your saved taps here till the 1st of December: (And for those who’re interested, we’ve included the meta-data too, so it’s technically possible to build a viewing experience around the saved…

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.

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The initial research lead me to try a treatment that’s currently on the market for breast cancer, but we thought might work well on my tumors. So far, the treatment has helped to stabilize the tumor growth.

Dealing with side effects can be challenging, which lead me to think about how to deal with them. In this article, I’m going to go through a few strategies for dealing with a “foggy” brain. …

082018 – Sitting on a chair equipped with big sheets of paper and a pen, last week I randomly ended up drawing three portraits of people that showed up — to have their portrait drawn… The imaginary contexts of each of those portraits ended up being a sun, a cloud and a heart. Reflecting on that, here’s a short poem honoring our amazing ability to imagine. ‘Dreaming’ to me is one of our mind’s most fascinating capabilities and one that’s behind our growth as an individual and as a society as a whole.

I dream a lot
about how things could be
it seems, my life is about
making some of those dreams become a…

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Dear supporters,

We’ve reached an important milestone and, though there’s a lot more work to do, we wanted to share the good news with you. We just raised an initial three-million-dollar investment to build our product and technical infrastructure, as well as support the operations of working with our first hundreds of patients in several disease areas. As many of you already know, we’re currently focussed on NF2, NF1 and schwannomatosis, but we’re expanding into more disease areas soon. Our goal with RDMD is ultimately to be there for all diseases in need. …

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

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About a month ago a –dare I say ‘crazy’– event came together that I’ve been very lucky to be part of. We organized a genomics “Hackathon” around my genetic condition, called NF2. More then 300 smart people from across the country signed up to spend their Friday night and weekend to participate, ranging from people in biomedical research, Pharma, AI and computer engineering. This alone felt humbling before the event even got started.

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The genomics dataset that was provided during the weekend was my own, since that was the only one available at the time. Luckily this is not going to stay like that, since we have other brave patients already signed up to provide their sequence data as well. This is our mission, as a patient community we want to build the best dataset for NF2 out there to unlock new research. This event shows what you can already do with just one, imagine what’s possible once we have much more. …

Starting tomorrow the 23rd of June at 6pm PST (San Francisco)

The NF2 Hackathon is coming up this weekend , starting Friday night at 6pm PST in San Francisco (see this post to learn more about the event).

We have seen overwhelming interest (over 200 people signed up) and have an amazing group of people coming to the event. Patients, data scientists, long time NF-researchers, friends and supporters from all kinds of domains.

To open up my genome data this weekend to 200 ‘bio-hackers’ feels a little weird and at the same time quite normal. It feels weird, because it’s so personal and we’re not quite used to it yet. It feels normal, because this is probably what we need to do to move the ball forward. Ultimately, finding better answers for diseases just requires people’s motivation, efforts and collaboration. …

What do you do once you have your genome sequenced? Instead of letting it sit on a hard drive, you let more people dig into it. Genomic sequencing creates a bridge between computer-technologies and biology. This has big implications for the way we work on improving our health. It is really important that we start finding new ways to collaborate across the different disciplines to get the most out of it.

In collaboration with SVAI (Silicon Valley Artificial Intelligence), we are organizing a “Hackathon” (on the 23rd-25th of June in San Francisco), where we are inviting people from different disciplines to spend the weekend working on NF2 using my own genomic data (derived from my tumor tissue and blood). …

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Hello, my name is Onno. As an experienced entrepreneur, I’ve spent most of my life building new companies to help improve people’s lives.

A few years ago, I was diagnosed with a rare genetic disease called neurofibromatosis type 2 (NF2), which affects 1 in 40,000 people worldwide. Ever since my diagnosis, I have been looking for a way to help fix it. But there are many challenges:

  1. It’s a rare disease, which means there are limited resources for research compared to ‘bigger’ diseases
  2. Even though there are exciting new technologies out there that might help, many of them are not mainstream…

Onno Faber

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