My ALS Journey: 3/n

Here is what happened in the last three weeks. Let me start with a very thoughtful Christmas present.

Brief Answers to the Big Questions by Stephen Hawking

My son Marius gave me the Christmas present “Brief Answers to the Big Questions” by Stephen Hawking. I’m very curious to read it.

You may know it. Stephen Hawking had a very slow-progressing form of ALS. He was diagnosed with ALS 21, and his life expectancy was two years. On the contrary, Stephen died at 76. Additionally, Stephen was widely regarded as one of the most brilliant theoretical physicists in history.?

His fights give me great strength, hope, and motivation.

My Disabilities

So far, only my lower motor neuron (second motor neuron) is affected. Typically, ALS affects the upper and the lower motor neuron. Damage to the upper motor neuron (first motor neuron) causes spasticity, hyperreflexia, and muscle weakness. Damage to the lower motor neuron causes muscle atrophy, fasciculations, and hyporeflexia. Consequently, I need help getting washed, dressed, and eating, and I need a walker to walk more than a few meters.

Money Raising Campaign

Honestly, the research around nervous diseases such as ALS is heavily underfunded.

Here is a statement from the ALS-Ambulanz, translated into English:

ALS is one of the “orphans of medicine” – rare diseases that are not the focus of social attention. Treatment is significantly underfunded, and there is also insufficient funding for ALS research. Donations and other third-party funding are of fundamental importance.

This has become obvious with the Ice Bucket Challenge.

Since the challenge in 2014/2025, a lot has changed. Many trials are running worldwide, but still, the therapy to stop ALS progression or slow it down significantly is missing. There are only breakthroughs in the genetic variant of ALS, which causes 10% of all ALS cases.

But research and therapy require more money. Here is my idea. Let’s make our money-raising campaign.

Our Money-Raising Campaign

In a few weeks, I will start a donation for ALS research. My money will go to the ALS-Ambulanz. The ALS-Ambulanz is part of the Charité and has a leading role in the research and execution of trials in Europe. You will get my 3-book bundle Modern C++ Collection for half the price ($70 -> $35).

Let’s make this campaign big. If you want to participate in this campaign, please get in touch with me. Say what you want to offer for one week, name your discount, if any, and whom you wish to donate to.

Here are my two favorites:

• ALS-Ambulanz of the Charité
• I Am ALS: Non-profit organization in the United States

I will list your offer on the upcoming campaign page, but you should also advertise it. If you don’t have anything to offer, please spread my word.

Let’s see what we can achieve together.