2025 Central Asia Adventure – Beyneu Kazakhstan
Today’s Huntington’s Disease report is about the Wexler family and their pioneering role in finding the HD gene and communicating about HD and genetic issues to the public. In the late 1980s, a breakthrough in HD research came from an unlikely source: wooden nickels. Leonore Wexler was diagnosed with HD in the 1950s, initially misattributed to alcoholism or depression. Her diagnosis devastated the family and spurred her husband Milton’s lifelong commitment to HD research. Milton founded the Hereditary Disease Foundation in 1968 and spearheaded early outreach efforts with the people of the Venezuelan Lake Maracaibo district which had a high incidence of HD. Milton distributed these wooden nickels to participants, encouraging them to return for genetic testing without stigma. His daughter geneticist Dr. Nancy Wexler led a team collecting over 4,000 blood samples from these HD families, leading to the 1993 discovery of the huntingtin gene mutation. She received the National Medal of Science in 2014. Milton and Lenore’s other daughter Dr. Alice Wexler is a historian and writer who wrote ‘Mapping Fate’ in 1996, a memoir detailing her familyâs HD journey and the Venezuelan research, and ‘The Woman Who Walked into the Sea’ in 2008, examining HDâs history. Sheâs contributed to HD ethics debates, advocating for patient rights in genetic testing. The entire Wexler family are absolute rock stars in the world of HD and the nickels became symbols of hope, with some families still treasuring them today.
Hello from Beyneu, the fifteenth stop on the trip. Beyneu is literally a wide spot with a Y-junction on the train line in the vast desert of the Ustyurt Plateau where you can continue east through Kazakhstan or go south across the border into Uzbekistan. Due to the travel path possibilities and trying to maximize what I can see along the way, heading south is the clear choice. Will it work? Just wait to see! This post is mostly about the logistics of setting up the next step along the way.
Early in the morning in Aktau I prepped and packed up. I put the apartment key in the lockbox and messaged the manager that I’m out.
I requested a taxi to the far-away train station with the inDrive app because no Yandex… The driver tried to call me 3 times, no English. Just come to the pin I put in the map, OK? I found him on the street, with a different car than the one registered in the app, but he showed me my name in his app so I guess he’s legit. It turns out he’s already got 3 people in the back seat, that’s why he was calling me to confirm I was only one person! He asked me to rate him in the app even before we’ve started the trip – wow. He drove recklessly, showed me a picture of his family on his phone while driving. He made a hot U-turn in the main road and got in the queue to fill up with LPG. Confusion ensues at the station about who gets the hose next. We finally arrived at the train station and I gave him 2000 and looked at him expectantly. He hesitated then gave me my 100 change – you’re not keeping the change with this crazy trip buddy!
The train station is scruffy but workable. I found a display showing my train so I’m happy I’m in the right place. A big train pulled in at 7:50, and my car 12 is the first after the engine. I showed the ticket on my phone to the porter, he waves me in. I find my cabin, left side lower bunk-yay! An older couple comes in, we mime back and forth. They’re from this town, I say I’m from Canada, they give me a thumbs up. They’re very cute and she talks the WHOLE way – 8 hours! I was given a nice little toiletries packet including a shoehorn, and a cup with a packet of instant coffee. We pulled out right on time. The porter confirmed I’m getting off in Beyneu, but it seems most people are going all the way across Kazakhstan to Almaty – I have to look up how many hours that ride is – wow 55 hours! We’re going only 90 kph across the desolate plain with occasional plateaus and a finger of a bay of the Caspian Sea just to the north.
After 8 hours we arrived in Beyneu 5 minutes early – nice work! There is no platform, just a dirt area between the station building and the tracks. The last step off the car was about 3 feet! I got on mobile data and got directions to the hotel I wanted. I had searched several major hotel web sites but there were literally no listings available for this town! I rolled down dirt roads for about half a mile and arrived at the one that looked best from backpacker reviews and pantomimed that I need one room to sleep tonight – she shook her head. NO! My worst fear came true, damn! I asked for another hotel to try, she said something that I couldn’t understand. I asked to get on the wifi and for her to type in the hotel name – Zhibek Zholy. I thanked her and rolled about another mile, past two guys splicing Internet fiber on the side of the dirt road. At the hotel I went into the first door, which turned out to be a restaurant. Back out again, followed by a group of local schoolgirls laughing at me, I must be a unique sight in this town. I tried to get through a sticky metal gate to the hotel door, they handed my suitcase over the gate to me and they all yelled “Thank you!” and giggled – very sweet. Fingers crossed I mimed for a room at the desk. The clerk had a list of room types in Cyrillic and English – I selected the Deluxe Single room, she crossed her arms, NO! I pointed to Standard Single room and she said OK. Whew! 9000 local or 14 Euros. I’ll take it! 3rd floor no lift… Spacious, great bathroom and shower. Fired up the wifi but it was a really poor signal and the connection kept dropping. I opened my room door and propped my phone against the door jamb, enabled hotspot mode and the laptop is now happy.
Now the hard part started – how to get to the next location. I’ll spare you the gory details, but there is the possibility of a train or shared taxi going south to Kungrad at the Uzbek border. I would cross the border then get a train further south that afternoon or stay overnight and get one the next day. This would take me to Nukus, or at least somewhere down that line, with the goal of eventually arriving in Samarkand after a couple of days. The other option is just to continue literally on the same train line I was on, across Kazakhstan to the next major town of Shymkent. From there I would have to head south across the Uzbek border to Tashkent, and then backtrack west to Samarkand and hopefully into to Dushanbe Tajikistan. There’s a big roll of the dice as to what happens tomorrow morning.
After getting settled in the room, I walked back to the station to buy my train ticket south. I talked with one lady in a ticket window with Google Translate and asked to buy 1 ticket for the next train to Kungrad. She said no ticket. Uh oh. I asked when is the next available day because some trains in this region don’t run every day. She pointed to another ticket window on the other side of the room. I went through the same thing and this lady says ‘today’. Yay! I said OK I will buy one. She says no ticket. Oh man, what is happening? Finally she conveyed that every ticket has been sold going forward for 45 days. WTF? OK now I’m stuck in this dirt town without a train south. I decide I’ll come back in the morning and get a shared taxi. How bad could it be? Ha, have you read my stories so far? I went back to the hotel and checked Rome2Rio, Grok and ChatGPT about the shared taxi scenario and they all said everything looks good for the morning. I booked one night in a hotel in Nukus and a sleeper train ticket from Nukus to Samarkand – just over 24 hours.
With all of that stress taken care of, I settled down to watch some YouTube but the Wifi was ragged and the videos were buffering. I went out into the hallway to see how far away I was from the Wifi router. I walked all the way down the hall and found one with a bright blue LED. Walking back to my room I looked up and there’s another router right over my door, but with no LEDs lit up! I got a table from my room, unplugged and plugged the little power supply, a yellow LED lit up then turned blue. The Wifi is now screaming fast. I swear I should start charging to fix hotel’s Wifi problems!
Bottom line: Beyneu is a dirt town along the train line. For me it was the end point of a nice 8 hour train ride from Aktau that lets me head south into Uzbekistan. Or does it?
Next stop: Where oh where will I end up?
