As usual, the last couple of weeks have been very colorful and eventful. I delivered my TEDx talk in San Francisco (see below), and right after the talk, I moved to Los Angeles to work at UCLA in one of the leading NF2 research labs to help speed up the drug development pipeline and learn from the experience of working in a lab first hand. I am very impressed by the work the scientists are doing and grateful to spend time with them.

From what I’ve observed in the the last couple of years, drug development basically rests on two pillars, 1) we need the science (the work done in the lab) and 2) everything around it, the “paperwork” and financing (and I don’t mean that in a diminishing way). This is an oversimplification, and most ideas end up not working out. But the work in the lab is crucial for understanding a disease and coming up with new ideas for how to treat them.

I also published an article based on my experience taking my medication, “Three tips for navigating your foggy brain”. “Brain-fog” is a common side effect for a certain class of cancer therapies, but I’ve noticed any human being can experience the symptoms. Personally going through this experience whilst on medications resulted in a better understanding of it and new behaviors in order to deal with it.

As you know my mission is to accelerate treatments for (rare) diseases, and I’m taking the problems I run into working on NF2 as a starting point.

I have always seen the primary role of my contribution as crafting and shaping new ideas and bring them to fruition. We need a bigger community around the problem of rare disease, this is where you come in.

This problem deserves our attention, rare diseases have been neglected for a long time (by all of us) while hundreds of millions of people are suffering from them world wide. The community should extend beyond the world of rare disease itself, and include anyone that can and wants to be part of it in any way. We need different points of view, people with different skillsets and new perspectives to keep the creativity flowing.

We’re all patients one day. Humans are very capable of overcoming big hurdles when there’s enough attention and drive to do so. And in this matter, every person counts. I believe as a human species, we have an opportunity to solve most diseases within the next couple of decades. It doesn’t mean that it is going to happen, but with enough people willing to do their part, I believe we can do it.

Not all things that start small are great, but all great things start small. I started a Patreon campaign and a Discord channel to help build and grow this community of problem solvers. It is just getting started (the first supporter is already in! 🎉). If you want to help, please go ahead and follow this link to my Patreon page, or forward this newsletter to someone you think may be interested.

Let’s kick some ass,

Onno

I had a blast delivering my TEDx talk in San Francisco. As always there was an amazing audience (including almost 100 volunteers), and it struck me how many people came up to me afterwards to share their personal [medical] story with me. Rare diseases really are common (1 in 10 have one, half of them are kids). In the talk I discuss my personal journey (and how my life has been unfolding around problem-solving and entrepreneurship) and how it got intertwined with my rare genetic condition.

The talk will be online in the next couple of weeks, check my Twitter or Facebook page to stay in the loop.

I’ve been on drug therapy for just over a year now, (find out how I got to that treatment here) and the treatment has helped stabilize my tumor growth. However, there’s no free lunch and therapies like these cause side effects, one of them being a “foggy brain”. I’ve learned a few things about how to deal with this better, and I wrote up my learnings in the article below.

Fly with your doctor! We hopped over to Catalina in a beautiful 50 year old Cessna…