U1k season 3: Unknown Territory

Ralf - this is no secret - likes to meet with friends. New and old. One of them is Philipp. Ralf brought him into the KPMG team a long while ago. It was just that Ralf left KPMG shortly afterwards. So it's high time the two of them finally did something worthwhile together.

The two of them met up for a beer in Zurich. Besides the dumb stuff that men are known to talk about at a late hour, there was also serious discussion about life and family. Philipp's story is impressive. It has to do with his three-year-old son. Andrin - that's his name - has something few have. And U1k is now pursuing a new goal!

Andrin's life is determined by the FOXG1 syndrome. This very rare genetic defect severely restricts a child's development and health. Because of FOXG1, Andrin has problems with his eyes, has not yet learned to speak and cannot walk independently.

Does this mean that Andrin leads a less happy life? On our journey we want to deal with these and other questions. We are curious and look forward to many exciting encounters.

Our story is life-affirming. We want to reach many people, because FOXG1 only concerns a population of U1k people. That’s not many from a purely economic point of view. That's why Philipp and his wife Anouk now want to establish a foundation. But more about this in a later chapter.

Typical U1k! Everything essential is already agreed on the first evening. Philpp has a Vespa, so does Ralf. But Ralf has to exchange his quite modern bike for a Vespa PX125. This is technology from the 80s (like our Volvo from the old days). We want to make it exciting again. And such an old two-stroke also rattles wonderfully and leaves behind the smell of freedom. Awesome! In September we’re starting on our scooters.

And the destination? It doesn't really matter. Because the journey is the destination. On our journey we want to meet people with FOXG1 syndrome and experience their history. And if all goes well, we will end up in the current epicentre of European political entertainment. For in London, there is also something meaningful being created, because Prof. Corinne Houart has dedicated her research work entirely to the FOXG1 syndrome.

U1k has arrived in 2019.

You don't have to be Superman to be truly loved. And Andrin makes it easy. He loves to cuddle, doesn't go through the defiance phase and there is a very close relationship between him and his parents.

But it is difficult. The constant lack of sleep and the lack of space put a strain on the nerves of Anouk and Philipp. And yet - and this particularly impresses Ralf - the two of them radiate an extremely positive energy. How is this possible? Grandparents, relatives, therapists and friends certainly make a large contribution. It wouldn't work without them! And sometimes a glass of wine also helps...

Why? Why us? Yes, of course Anouk and Philipp also asked themselves these questions. Intensively! Philipp is a pragmatist, he accepts this situation as a whim of nature. Anouk, on the other hand, is less oriented towards the strictly scientific teachings. She sees this fate as a test. But why them? Well, because they can. Yes, the two of them see themselves in a position to pass this test. They say "yes" to Andrin and they say "yes" to life.

Dear readers, you have read this chapter to the end. Thank you very much for giving us your time. , From time to time, it’s good to reflect on what is really important in life, right?

... when we get more and more of everything. That's the way it is. Because for us, standing still does not make us happy. Not at work. Not in our typical materialistic way of thinking. And also in relationships, we are not good at appreciating the "here and now".

Also, we love to measure and compare ourselves. And it makes us happy when we realize that we have drawn the better lot or have performed better. There is a "benchmark" for everything. For our jobs, needless to say. But also for love. Yeah, Tinder doesn't really make life any easier.

... when we can adapt to new situations. Without a doubt this is an essential characteristic of the human race. The only obstacle to happiness, then, is wondering how things might have been if they had turned out differently.

And that is exactly where many disabled people have an advantage. Because they lack the ability to imagine what could be, it's easy for them to make the most of what is. So does Andrin!

Disabled people are usually no more unhappy than you and I. In technical jargon this is also called "Disability Paradox" and there are numerous research publications on it. Especially inspiring for this contribution was, by the way, a comment from BBC News.

... if we don't have to suffer pain. Naturally. And this in no way distinguishes Andrin from us "Normalos". From a subjective point of view Andrin can lead just as full a life as you and I do. The only conditions are that it his body allows food to be consumed to deliver energy and that natural recovery cycles (sleep) are possible.

And this is exactly what U1k is committed to. This is exactly what research projects should support will be. So that Andrin has the chance to lead a happy life. Even if it is different from yours and mine.

Admittedly, planning a U1k trip in detail is somewhat borderline. After all, we want to prove our "spontaneous problem-solving abilities". But this time we also want to get to know one or the other FOXG1 child. Therefore a minimum of structure is indicated. Because the people who expect us also want to be able to plan a little. By the way, we are particularly excited about our visit tomorrow. I think we will already have something to report. This is what our route looks like now:

> Day 1: Würenlos - Greifensee - Stuttgart
> Day 2: Stuttgart - Heidelberg
>Day 3: Heidelberg - Luxembourg
> Day 4: Luxembourg - Brussels
> Day 5: Brussels - Calais
> Day 6: Calais - Brighton
> Day 7: Brighton - Devizes
>Day 8: Devices - London
> Day 9: Visit Prof. Corinne Houart
>Day 10: Party Saturday
> Day 11: London - Zurich

Philipp and Anouk need 30,000 Swiss francs to set up the Foundation for the benefit of FOXG1 research.As of now, as our travels begin, we have already raised half of this sum. Strictly speaking, it is currently CHF 15,763. Isn't that insane?

We are incredibly grateful!   As you know, it is Ralf who’s in charge of this blog and is the ruler of what is written. And Ralf - well, me - doesn't shy away from "dissing" Philipp, because he is still in delay with writing thank you cards. Okay, so am I myself. But we will make up for it. It’s a promise!   So, what do you think? Will we be able to double the amount? It's already a somewhat ambitious goal. But dreaming is allowed...

Dear Andrin, our journey is dedicated to you. On Sunday you celebrated your third birthday. We had a party with our family and closest friends. But you have made many more friends in the last half year who want to support you. Happily you are looking into the camera as if you understood what was happening around you...

 Philipp, my kind and scatter-brained partner from the Züribiet, I have had yet another déjà vu. While I'm writing, you’re sending me a WhatsApp and informing me that you're looking for your driver’s licence. Despite the dynamic times we live in - some things remain the same. Didn't the very first U1k trip start like this? We wanted to drive off with the old Volvo when Manuel, my partner of the first U1k, devoted himself to the legitimate question of where his driver’s licence is... Good luck searching, Philipp!   And what else? Just pack! And think about what will be forgotten. We’re hardly going to find a clever answer to this question at this moment...

'I guess there won't be anybody there when we get there', we thought. Wrong! We did not count the people who received us. But there were many. And the applause was wonderful and uplifting! We were also interviewed by the local press. Two local newspapers will report about us. That's good! The whole world should know about FOXG1!

It was a huge party. Many children were there, also some Foxies. Our Vespas arrived in this round of course very well. But the absolute highlight was the coffee cart of Tina! Not only did it produce super fine coffee, but it also generated a lot of income for the benefit of the FOXG1 foundation.

So, from Würenlos to Kirchheim am Neckar it is about 290km. Since it is to be expected that in 2019 the road will have to be shared with other road users, a time budget of at least 6.5 hours would be appropriate.

In addition to this groundbreaking insight, we now also know that at some point your backpack will hurt and you don't have to spend more than 6 hours on the Vespa in one day. That's also the opinion of Tomtom-Navi, who gave up the ghost after about 6 hours.

We don't want to moan now, after all it rained only for a short time, but it was long enough for us to plan only dry weather from now on. And it doesn't have to get colder by the way...

The enlightened will agree with us. And the not yet enlightened are surely grateful that they finally learn that a Vespa is not a scooter. Otherwise it would not be a Vespa, but a scooter. It's actually logical. The difference? Quite simply: a Vespa has character!

Thanks to this, Philipp's Vespa has solved the problem with the gas cable all by itself. And the fact that the part simply roars out loud on its own is also a sign of character. And it was also funny when Philipp jumped a little at the traffic light at the start, otherwise these machines were humming reliably. Maybe it's strange that Philipp's Machina pulled the mountain massively better. But mine has a catalyst and I must therefore have a much less guilty conscience...

Kyle is now 7 years old and like Andrin he has FOXG1-Syndrome. Kyle has severe difficulties swallowing. Even small lumps in porridge, for example, causes him to retch. This inevitably makes it difficult to ensure he gets the right nutrients. At the moment he weighs just 16kg.

Enter Dr. Mummy. During her research into therapeutic aids she’s tried many things. Thanks to her persistence she discovered that a certain blend of Chinese herbs helps Kyle to sleep and for the past year he has slept through the night. The recipe, incidentally, follows the traditional Chinese medicine organ clock theory.

Kyle has a regular routine and daily attends a school for disabled children. He is in a class with six other disabled children and they work closely with therapy dogs. Aha! There is no doubt which dog is Kyle’s favourite- Kyle communicates with us, even without words.

Today we planned to do a mere 80km. Instead of spending hours being overtaken by stressed drivers on the fast roads we opted for a more leisurely trip on backroads which we almost had to ourselves.

Past vineyards and apple orchards we trundled. And to top it off the weather was great! Naturally we had to try the local tipple, preferably with a sumptuous lunch. Lovely chats followed with folk at neighbouring tables at the ‘Besenwirtschaft Reblaus’ pub in Malsch. And under the motto ‘make the most out of every situation’ Philipp gave out a handful of flyers

Thanks to a new sponsor our official amount donated has gone up! Thank you so much for the amazing support! The current balance now stands at 17 857 francs.


We feel like we’ve really earnt our little rest.

Enough with the whinging! At last there’s a couple of pieces of good news to report. Firstly, we set a new speed record. No really! The speedometer on the satnav recorded 86 km/hr. A Vespa has character, I mused. They hate the rain as much as we do and like to make a fast getaway, too.

The second record: never before have I gone so far in second gear. Yep, the satnav sometimes likes to choose steep and pretty narrow roads.

The third record: never before have we felt so hostile to so many people in one day. Nobody wanted to donate. They could have got away faster had I, or rather we, not stood in their way.

Record number four: Philipp managed to stall his Vespa three times at the traffic lights. Sorry for the diss, Philipp, but you did suggest you’d have to push me up the mountain! ;-)

It’s her smile! Audrey, Romy’s mum didn’t pause for thought when I asked her what she enjoyed most about life with her Foxie girlie. For Jean-Pierre, her dad, it was the experience of being able to discover new things together time and time again.

Romy, who will be 3 years old in January is a one-off. Okay, everybody’s a one-off. But Romy is the only child in Luxembourg who has a FOXG1-Syndrome diagnosis. We met the young family in a quiet bar in the Luxembourg old town. Too much noise is stressful for Romy.

Amongst other things we chat about the downsides of living with FOXG1-Syndrome. It’s the uncertainty, Audrey says. There are so many questions with no answers. And there’s always a worry what tomorrow might bring. And, of course, there are the times when Romy wakes up at night. But you learn to live with that, don’t you. Do you? Of course you do. Romy and Jean-Pierre are positive people. Love conquers everything.

If the Grand Duke was there, his flag would have been flying outside his palace. Alas it wasn’t so he wasn’t. So instead Audrey and Jean-Pierre acted as our own private tour-guides, showing us around the prettiest parts of the Luxembourg old town. Had Manuel, the other co-founder of U1k and a keen photographer, been with us it would have warmed his cockles.

However, our U1k adventure isn’t all play. There’s always homework to do in the evenings. We’ll just have plan to stay longer next time.


And what’s our current donation balance? Not telling. It’s Saturday after all. The bank’s closed and Philipp’s complaining that he’s missing the holiday vibe. So today we’re not going to lure you in with numbers. We’re going to keep calm and carry on.

A Vespa is perfectly designed for travelling 700km over 3 days. But on day 4 Phillip and I notice small relationship problems starting to creep in between specific parts of the body and the Vespa seats. To formulate it a little less poetically: after just an hour in the saddle today our backsides were already sore. And the shoulder and backpack straps don’t work properly any more.


At least it had only chucked it down for a moment today but still it was pretty fresh. A longer lunch break was prescribed to get us back from the brink of hypothermia.

We’ve now passed the half way point on our way to London. And we have a new-found respect for the cold and our backsides and shoulders….

Brussels smells like waffles. We noticed that as we approached our Hotel on the Vespas. Incidentally ‘approached’ is the right word- we couldn’t actually reach our hotel through the pedestrian zone on our steads. But at least we get to sleep really close to the city centre.

Yes, we admit, we book hotel rooms in advance! We know that isn’t exactly in our manifesto. But hey! I think we deserve a little leeway. Driving long distances on Vespas, meeting new people and having to write daily reports means we need a few creature comforts ;-)


Back to the scent. We’ve realised this constant companion is totally underrated. It’s not just the whiff of waffles that will remind us in the months to come of our U1k adventures.

Hey Phillipp! You’ve planned this so well- we’ve arrived in Brussels on exactly the right weekend. The Grand-Place is hosting the Belgian Beer Weekend….


Beer. We both love beer. I’m afraid this report has to quickly finish here….

Just this minute we’ve received another donation notification. Hey, these are the moments that really mean a lot to us. It’s pretty cool to be surrounded by so many friends.

Thank you so much. As of now, we have a donation balance of 17 857 francs. We have no idea where this journey is going to take us. But we are already very, very grateful for everything. Thank you ALL so much!

If you want to find the beautiful and exciting places of this world, you can do it in two ways. Strategy 1: you research and plan. Strategy 2: you just let it happen and get lucky from time to time. And it was with the second strategy that we discovered Diksmuide.

The first thing that catches the eye of the first visitor to this city is the big market place. The town hall, a UNESCO World Heritage Site since 1999, plays a major role in this. But not only, because the gothic Sint-Niklaas-Kiche is also impressive.

Thanks to a short conversation with a waiter and some Wikipedia research, we learn that we are right on the front line of the First World War. The city was completely destroyed and rebuilt in the 1920s.

Learning from history - that's what we think is important. That's why we take our time and visit the so-called death passage, a replica of the trenches from the time of the First World War. Visiting this place leaves a depressing feeling. But that's the way it should be.

So first of all I would like to thank, on my own behalf, the Würenloser Kulturkreis, who organized the Openair Cinema in our pretty municipality. Without this troupe, I would have had no idea of the film mentioned in the title. For those who, like me until four weeks ago, are similarly ignorant: it's a pretty funny film about the prejudices of the French against the north of their country.

We drove past Bergues. Totally intrepidly, we even drove a little further north - to Dunkerque. From there a ferry should bring us to Dover tomorrow.

We spend the night in a hotel which we happened upon after our Vespas saw the sea for probably the first time in their existence. But we didn't find the room we were looking for right away. A fairly run-down hotel actually rejected us. No more rooms available - and that totally outside the high season. This feels quite typical for U1k. Manuel and I had the same experience two years ago in Debrecen (Hungary).

By the way, our room is very cheap and actually quite nice. The only criticism: I would have somehow appreciated it if the bucket in the bathroom had been emptied. Whatever, at least now I know that the previous tenants were on their way with a little baby...

Our first few kilometres in England weren’t exactly relaxing. Although the satnav is programmed to avoid motorways, we found ourselves on a duel carriageway and were overtaken by a lot of fast cars.


We escaped onto the side roads and found the South of England we know. The roads were narrow and wriggly with high hedges on either side. Up and down we went on the sort of surfaces that you pay more attention to when you’re on a Vespa. We felt like racing drivers….


And as we stopped for a photo opportunity, the sheep looked at us as if they had never seen two Vespas or two funny Swiss people before.

Here the famed Battle of Hastings took place in 1066, where the French Normans beat the Anglo-Saxons. But for me, even more importantly, is the trip I made here with my wife, Karin, a long, long time-ago. That was before we got married. And that was exactly 25 years ago today.

My dear Karin, thank you so much for supporting our U1k adventure! And thank you even more for everything that we’ve experienced together in the last 25 years. Happy silver Anniversary!

To commemorate this happy day, Philipp and I decided to make a short stop here in Hastings. And we were just in time for a quick beer. The question arose, did we actually wanted to travel on to Brighton today? We decided against it. So tomorrow’s stage will be longer than we originally planned.

The title remains cryptic. The message, however, does not. With the current donations we have cracked the 20 000 franc mark. To be precise we have 20,844 francs. That’s amazing!

But, of course, our journey continues and we look forward to everything that is yet to come. It’s true- at the heart of it all is our unswerving gratitude.

Thank you so very, very much!

What on earth is that? We asked ourselves this question when Susi led us to Goodwood by side roads. At the moment, the "Good Revival", which will take place next weekend, is being prepared. During those three days daring people in their cars will compete with the vintages 1948 to 66. Even a Basler with his trailer has come this far. By the way, the whole event is huge. 150'000 people are expected, many of them have already set up their trailers. We are quite impressed, but still think our Vespas are even cooler.
It seems that the whole area is already infected by a speed virus. We notice that people typically drive Range Rovers around here. And fast! And overtaking is quite aggressive, which we didn't always find funny. Lest we forget: it rained and the track was winding and narrow.
Well, we don't want to complain about rain. There was a fine drizzle for a long time, but we are used to worse. Our bags would not confirm this statement. For the first time the clothes we wore were drier than those in the bag...

Konnie supports FOXG1. She keeps in touch with the press and also organizes a news article about our trip. She is currently working on a film project to draw attention to the FOXG1 syndrome. But not in the amateur league. So not to compare with Philipp's little films, although they are of course cool. Konnie does this professionally, because she has a background as a production designer and already has experience as a director.

Konnie has three children, teaches yoga classes and also works with other children who have very specific needs. How does she do it all? Well, she's not alone. She can count on a little help from her friends and also on welfare. Without that it wouldn't work. She appreciates this support. And she appreciates the moment and everything that makes life worth living.

Mother of three children, teaching yoga, working with kids with specific needs. Very good support system, financial support. That is necessary.
Appreciating what life brings, being grateful, especially for the moment.

Today we had a bit of a time buffer today. Not to waste the opportunity we picked up the mobile and checked to see if there was a gin distillery nearby. Philipp found one. And not just any old distillery- none other than the Bombay Sapphire one. So naturally we steered purposefully it’s direction.

100 000 bottles are filled here on a daily basis. Even as a visitor it’s hard to take that in. On the other hand, it was really exciting to sample the odours and discover your own personal preferences.

And yes, of course we had to have a taste- but we were very disciplined. Just the one…..

Stewart is the last Foxie that we are planning to visit. The phrase ‘Luckily unlucky’ fits him perfectly. The genetic mutation affects him much less than many other children who have the FOXG1-Syndrome.

Stewart can walk and talk. At 23 years old he could probably sit on the FOXG1 council of elders. Though he isn’t the oldest Foxie. In Europe alone, there are 2 other older people diagnosed with the FOXG1-Syndrome, one in their thirties and one in their forties. That is reassuring!

Stewart’s illness was diagnosed at 18. 18 years of uncertainty- anything but easy for his parents. It was also hard to find the right school for him to attend. Sometimes they had to travel long distances on a daily basis- at times 150km a day.

Stewart needs support. But he also gives a lot back. And you feel yourself growing in his presence. Amongst other things you learn tolerance from him- something so important in this day and age.

We spend a wonderful evening with Judith, Ian and their children Jack and Stuart in a pub. Judith and Ian are the last FOXG1 parents we meet on our trip. To summarise, Judith is another super-woman with a lot of energy.

Judith founded the FOXG1 society in the UK with two other sets of parents. She also has a mediating role between the umbrella-organisation in the USA and the UK one so that she can make sure the projects in the USA and Europe complement each other. Whilst the USA focusses heavily on genetic research, European projects work on finding medicines to mitigate the effects of FOXG1.

And like many other FOXG1 mothers Judith wants to help others. She lives in the moment and is grateful for everything that it brings.

Yet again donations have gone up. And yet again we are humbled by all the support. Hey, we’ve already collected 22 203 francs. That is just super-stompingly awesome!

If this continues we’ll get closer to our 30 000 franc target by 1k a day. That means we should probably keep going for another 8 days……

In my project work I am used to managing expectations and not making premature promises. However, Corinne does not hide behind the platitude that nothing can be planned in research. And that’s impressive.

Her goal is clearly defined. Within three months, 10’000 medication components could be tested. They have all already been approved by the FDA. Therefore, it is essentially a question of putting the components to a new purpose. This massively shortens the path to a marketable medication.

There are two meds whose efficacy should fairly certainly be proven in zebrafish. But maybe there are as many as twenty of them. And all are aimed at simplifying life with the FOXG1 syndrome and alleviating its symptoms.

With 100’000 francs, Corinne could really move forward. That's a really good deal! But why doesn't the EU Commission see it that way and finance this project with its considerable money pot for research funding? The answer is simple from an economical perspective. There are still too few people suffering from FOXG1.

It’s always the same. If one does not find oneself within the usual guard rails of our society, it isn’t that easy. Fortunately, there are also many people outside the circle of U1k-nutcases who are willing to help.

But Corinne is under no illusion. The results of her work will have to be supported by the pharmaceutical industry. This is necessary so that final tests can be financed and a marketable medication can be produced. We understand that this phase also requires persuading people, but we say ‘cross the bridge when you get there’.

So... where are we now with the donations? We feel our story can still do with a bit of mystery and so we won't reveal anything yet.

But at least as exciting is the question if Philipp's organizational skills have worked and our Vespas are actually picked up tomorrow for their return journey. So I'm not really that relaxed. But that will certainly change in the course of the evening over a beer or two...

Season 3 of U1k is history. Yet again we’ve received a lot of encouraging feedback during our trip. Our balance sheet has two currencies: the donations balance and the energy balance. Below is a list of all the people and institutions who contributed to the first. The second is made up of people we were able to take virtually with us on our journey.

Thank you to all of you. And that comes from the heart.

Adi B., Agnes S., Ana P., André + Gabriela M., Andri R., Audrey C. + Jean-Pierre I., Barbara H., Caterina R., Cecile R., Corina N., Cornelia G. + Patrick S., Daniel + Susanna I., Daniel N. + Seraina S., David L., Denise E., Edda R., Elvira + Dudley M., Erika B. + Heinz K., Evang. ref. Kirchgemeinde Kilchberg, Frédéric B., Gian G., Stefano F., Guido Francesco M., Inge F., Irene H. + Rainer F., Irene P., Isabel K., Janine V., Johanna B., Jörg S., Julien H., Jürg E., Karin B., Karin P., Konrad E., Lilly J., Magdalena G., Marc M., Maria E., Marianne L., Markus P., Markus S, Marleina T., Martin W., Matthias D., Melanie + Christophe G., Mina B., Nicole S., Norma R., Peter E., Prospective Media Services, Ramona S., Rebecca K., Reto + Yasemin B., Reto V., Rita J., Roger Z., Rosemarie + Sven M., Simone P., Sina G., Sonja B., Stefan B., Stefan H., Stephanie C., Tatjana P., Theo + Käthy B., Thiébault B., Tidi + Geri R., Ulrich Amberg, Urs + Doris W., Urs T., Ursi T., Ursin S., Viktoria G., Yvonne + Ivan Ä. plus a few more anonymous TWINT-donors.

Stop right there! Our story isn’t quite over yet. It’s always important to have something to look forward to. And in this case, it’s the next U1k party. It’s taking place on Friday 8th November in Barrio5 in Zurich.

Here’s the running order:
- 6pm   Door open
- 7pm   Charity concert by the legendary duo ‘Fools at Heart’
- 10pm   Party with DJ. Let’s dance the night away!

Maybe by then we’ll have an idea of whether we want to add a season 4. Maybe not. But in true U1k spirit everything is possible. No matter what happens we’ll keep you posted here- we’re really looking forward to it. In a cool location. At a cool concert. Somewhere with 40 sorts of rum. With a great party. But most importantly, with you!

Even after our trip ended, we were still allowed to accept donations. We have meanwhile raised more than 27’000 francs. So nothing stands in the way of the foundation's founding act. And we have pressed ahead with this at full speed in the past few weeks.

The Statutes have been passed. The Board of Trustees has been formed. And the Foundation has a name: FOXG1 Research Foundation, Liechtenstein.

So we really have every reason to celebrate and say thank you. Let's enjoy the success together!

Work hard, party hard! It may be arguable if our project really corresponds to the first part of this slogan. But we will certainly do justice to the second part ;-)

We are hugely looking forward to the U1k party!
When: Friday, November 8th 2019
Where: Barrio5 in Zurich
RSVP: not mandatory, but a message to hello.u1k@gmail.com is appreciated.

This is what’s happening:
- 18:00 Doors open
- 19:00 Charity concert by the legendary duo Fools at Heart
- 22:00 Party with DJ. Let's dance!
- Selection of 40 varieties of rum...