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  • Learning Something Unexpected: 1p36 Deletion Syndrome

    When I went to Snowbird I expected to learn about the wildflowers and animals in that area. Indeed I did. The pot gut squirrel (Uinta ground squrirel) and moose are two of the furry species there. The wildflowers were amazing. I hiked through fields and fields of color—Indian paintbrush, lupines,primrose, moutain bluebells, gentian, and many, many more whose names I don’t know. What I didn’t expect was to learn about a rare disease—one that was identified in 1981—1p36 deletion syndrome. 

    Ski Resorts like Snowbird keep themselves busy in the summer by hosting conferences. It’s easy to spot attendees associated with each sort of conference, as attendees have their own “look.”  The Ichtyologist and Herpetologist  Conference had an almost equal mix of male and female attendees. They travelled in groups of 3 to 5, had animated conversations, and could be heard talking about fish and snakes. They sat on the comfy couches in the lounge and ate together in the restaurant. The attendess for another conference, whose name I didn’t catch, had primarily male attendess, dressed in collared shirts, and hung out lined up at the bar as they waited for a conference-related party to begin. I heard one of them complaining that the party was starting at 6:00 PM, far too early for a party in his opinion.

    One day I saw a lot of women with kids, and at least one of the kids in each group “looked different” and behaved a bit differently from what you’d expect. How different? Just enough to conclude that these women and their children must be here for a purpose. While in the lounge one night, one of the women struck up a converstaion and said she was there for a conference on 1p36 deletion syndrome.  She said that although there were technical presentations that most families were there to network with other families and provide each other with moral support.  There were some Dad’s there too, but one night all the women went out together and ended up in the lounge with a drink. They looked happy, the conversation was animated, and I got the sense that they were getting a well deserved night out without their children.  

    So what is it?  Deletion syndrome happens with a bit of DNA is missing from from chromosome 1, location p36. First noticed in 1981, it wasn’t until 1997 that the symptoms were established. Scientists haven’t gathered enough data to predict life expectancy, but it is clear that every individual is individual in the symptoms they get and in the severity of those symptoms. It depends on how much DNA material is missing. There is no cure, just strategies for managing symptoms. 

    The symptoms can be changes in facial structure, learning disabilities, problems communicating, heart, eye, muscle, and breathing issues. For more specifics see the http://www.1p36dsa.org/what-is-1p36-deletion-syndrome/

    On another night, we ran into the woman who spoke to us earlier. She was impressed that we took the time to find out (on the web) more about 1p36 deletion syndrome. She was so delighted that she brought over another Mom to meet us. She said,  “These people actually found out what deletion syndrome is.” It lifted their spirits to see that others cared. 

  • Hiking in Snowbird

    When most people think of Snowbird, they imagine skiing downhill. For me, it means hiking downhill. After getting off the tram at the top of Hidden Peak (11,000 feet elevation), I started my 3,000 foot descent on the Cirque trail. The first section of the Cirque is a ridge with 360 degree views. This hiking-only trail warns skiers not to enter. With sharp drop offs on either side, I can see why skiing—and mountain biking—aren’t recommended. 

    The tram, where the trail begins, is in the distance.

    The ridge is dry, windy, and rocky with the sort of rocks that roll underneath hiking boots. The Cirque trail ends with a few gentle switchbacks that connect to the Peruvian gulch trail. I heard reports of moose sightings in this area, but didn’t encounter any while traversing it. The one constant on the entire hike was the wildflowers. As the elevation changed, so did the mix of flowers. 

    These flowers were espcially aromatic. 

    The lower part of the Peruvian was closed for repair, so we were detoured to a dirt road that, in winter, was an easy ski trail. By the time I got back down to 8,000 feet I was ready to rest my downhill muscles even though I had hiked only 3.5 miles.

    View from the lower part of the trail.

  • Riding a Mountain Coaster

    The first thing most ski resorts turn to when trying to attract a summer crowd is mountain biking. Not all of us mountbain bike. Even if I did, I doubt I’d have the nerve or skill to bike a trail that loses 3,000 feet in 3 miles. So I was happy to see that Snowbird had non-biking activites that suited me. My favorite is the mountain coaster. Each car holds one person, and that person has the power use the brake—or not. 

    The track looks like a conventional roller coaster—lots of twists and sharp turns, but no loops. The first part is a haul uphill, like most coasters, to give the car the potential energy it will need to complete the course. At the top, the coaster begins to wind its way through the woods, coming what appears to be dangerously close to the trees. The last section is a downhill spiral, at the end of which the rider must apply the brakes to prevent the car from a sudden, and complete, stop.

    The last section of the mountain coaster.

    The first time I rode the coaster, I had just come from riding the summer version of the bobsled. On that ride, using the brakes were mandatory to prevent tipping at the curves. But the coaster is attached to the track in such a way that it will not tip regardless of speed. I was assured that the idea on the coaster was NOT to use the break except at the end.  

    Braking at the end.

    Most people ride the coaster without using the brakes, but a few get scared and slow down on the curves. They try to leave enough space between each rider to account for that, because if someone does slow, the car behind is obligated to slow down to prevent a crash. 

    I rode many times over two days—brake free! Lots of fun.

    Stopped at the bottom of the "summer bobsled."

  • The Largest Concentration of Hoodoos on the Planet

    Bryce Canyon National Park claims to have the largest concentration of hoodoos found anywhere on the planet. Hoodoos are columns of rock, the top of which is harder than the material lower on the column. It’s the hard top that protects the formations. From Fairyland Viewpoint, located just before the official park entrance, to Rainbow Point, the park is full of orange-cream colored rocky columns. Some of them evoke images of animals or people.  

    Bryce Point is perhaps the most famous viewpoint due to the high concentration of formations and the expansive view, but I also enjoyed Fairyland Point because it was more serene that Bryce Point and a smaller version of it. 

    The farther you drive in the park, the less crowded it gets (although the park really isn’t that crowded compared to Yosemite or Yellowstone). Rainbow Point at the end of the park didn’t have that many people, but the parking lot is so small that I was turned away the first time I drove there/ Yovimpa Point, just up the road, has far few visitors and a beauty and charm of its own. After spending some time at Yovimpa, I went back to Rainbow and found plenty of parking.

    Thunderstorms were a daily occurence when I was there. Around 3:00 PM each day, the skies let loose with rain and thunder. But by 6:00 PM, conditions were good for viewing the park. Except for the skies. The clouds never cleared at night to give a great view, although Bryce is known for its dark skies and astronomy program. 

    There are a number of good hikes in the park, some on the rim and some into the canyon. Canyon hikes provide a great “looking up” view of the formations.

    After seeing so many hoodoos, the trees start to have faces!

  • Death Valley at 117º F

    Looking at this image it’s impossible to tell that it’s 117º F outside. Yet if you had been in the hotel room when I placed my bare foot on the threshold of the door to the balcony, you would have seen me jump and yell because of the hot metal. Shoes are a must outdoors in this heat.

    Driving here in a modern car allowed me to enjoy the scenery without noticing that the temperature had been steadily rising from 80º F in Lone Pine to what it is now at the aptly named Furnace Creek. I feel lucky because the weather prediction a few days ago had been for 126º F. A few clouds rolled in to keep down the heat. 

    You might think that the only reason to come to Death Valley in July is to prepare for global climate change. That might be a great reason, but for me Death Valley is a stop on the way from Mammoth Lakes to Bryce Canyon. I could have motored through, but I was curious to experience what it feels like to be in a burning hot place. I found that standing in the naturally heated, spring fed pool is key to survival. And so is having an air conditioned room.

  • Mammoth, Mines, and a Mountain Lake

    As beautiful as Yosemite is, at this time of year I prefer drving through the park, over Mono pass, and heading for the Mammoth Lakes area. Tamarack Lodge is several miles outside the developed Mammoth area and situation on a Twin Lakes. Although there were lots of people camping and staying in the area, it was serene and uncrowded compared to Yosmite. 

    View of Twin Lakes from Tamarack Lodge.

    With only one full day to stay in the area, we hiked the Duck Pass trail to Emerald Lake and then upwards to a view point at about 9.800 feet elevation. The lake was small but beautiful and quite peaceful until the teenagers on a day camp adventure bolted onto the scene. There were about three different groups of kids hiking that day, all having a great time. 

    Later that day, we took the short hike to the ruins of the Consolidated Mining Company. I learned that not all natural things are good for you!

    There were  a few bunkhouses that were standing, several company buildings that were partially or completely fallen, and lots of mining equipment.

    The mine had a lower entrance (called an adit) and an upper one. Each was closed with a barred door to keep humans out and preserve the bat habitat.  The upper Adit had an amazing view of the mountains, although I suspect the men working there were too busy to enjoy it as much as I did.

    Upper mine entrance on the left.

    Detail of old building.

    Detail of bunkhouse.

  • Embracing Seattle in February

    Most people would agree that August is the best time to visit Seattle, when the temperature can get as high as 77 °F and chances of rain fall to near 0%. It’s true. Riding a ferry under blue skies, walking the waterfront, and eating outdoors in August is glorious. But if you want a more authentic Seattle experience, visit in the winter. In February, I set out to embrace Seattle. Fortunately, it was one week after a debilitating snow storm. I was prepared for rain and cold, but not snow.

    The Pike Place Market is one of the most iconic Seattle sites, so I booked The Inn at The Market with a view of Puget Sound. When I arrived, the sun was shining and the Olympic mountains revealed their snow-capped splendor. But within 24 hours, the scenery disappeared and I found myself pressing into a bitter cold head wind and pelted by rain. This was not the day to hang out in Myrtle Edwards Park. I headed back to the Market for an indoor walk.

    The main arcade of the market is covered and sheltered from wind. There are not too many people out on a nasty day in February, which makes it possible to stroll through the market without fighting crowds. Seeking warmth, I explored the levels below the arcade. I’ve been to the market on many visits to Seattle, but only on this visit did I discover a level lower than I’ve ever been. From the looks of the shops, I’d guess the rent decreases proportional to the level. 

    Shops included:  a flea-market full of things not likely to sell, several budding artists’ studios, a sous-vide culinary school, a few collectibles shops, and a book publisher. The market provided benches in the center of the floor, with signs stating that proper behavior is required at all times. These benches were popular with some of Seattle’s homeless. I was happy to see a place where people can get a brief respite from the winter weather. When I finally made my way to an upper level, I ended up popping out of an unmarked door next to a restroom. I have no idea whether I will be able to find that lower level again! 

    Now I was hungry. I grabbed some butter from De Laurenti’s, ginger beer from Rachel’s, a loaf of bread from Three Girls Bakery, and a crab from one of the seafood stalls. I devoured this feast in my hotel room, watching the ferries cross Puget Sound. Winter IS a good time to visit Seattle.

  • Sahara Sunrise Breakfast

    I stood outside my tent after waking up from a night in the desert and noticed the camp staff scurrying about with tables and chairs. They were moving everything from the dining tent to a nearby sand dune. Unlike previous mornings when the air was a bit cold and breezy, today was warmer and still. It was a spectacular day to eat al fresco.

    When the desert sky is cloudless, the sunrise and sunsets seem faster, as there are no clouds to catch and prolong the glow. Still, it is an amazing sight to see the yellow-orange glow just before the round edge of the sun pops over the horizon. Once the sun was fully risen, breakfast treats appeared. Besides coffee, my faves were hard boiled eggs and Moroccan bread with fig jam. What a great way to start the day!

  • Riding a Camel

    Camels are too tall to mount while they are standing—either by flying leap or stirrup as you would mount a horse. The camel has to be seated. Then you must hop on as quickly as possible because some camels stand up as soon as they feel pressure. 

    A camel first gets up on its front “knees”, then it works on raising its back half, which turns out to be a two-step process given it has two bendable joints in each back leg. Then it fully extends each front leg separately. From the rider’s perspective, you rock forward, backward, and forward in rapid succession. Although it feels as if you are getting tossed about, most people in our group did a great job keeping their body perpendicular to the ground despite the forward and backward motion of the rising camel. 

    Riding is a different experience. Camels tend to rock side to side. They are also wide. During my first ride, I felt as if I was stuck in a weird yoga pose designed to widen my hips at the same time it pulled apart my vertebrae. Unlike most yoga poses, which end after about a minute, I held this “pose” for over an hour. I kept wondering: Is this good for me? 

    The view from a camel is spectacular. Perched high on the hump, you can see far to the horizon—red dunes, fossil rocks, scattered plants, and blue sky. The camel plods forward, its padded feet impervious to the hot sand and rocky surfaces. It’s easy to see why camels were key to trade in arid regions. 

    When I finally dismounted from my first ride, I was ecstatic to feel the earth beneath my feet. All that hip widening and spine jingling caused me to walk oddly. I now understand why a camel trek includes the option to hike next to the camel. 

  • Sleeping in the Sahara

    After almost a week of touring Morocco and sleeping in wonderful hotels, I arrived at camp on the edge of the Sahara desert. This would be the first of five nights of a camel trek.  I dropped my dusty bag and bedding into the white canvas tent our crew had set up already, and crawled in. What a change from the hotels! I was delighted to see a mattress, but decided it was best not to inquire about the dark stains on it. I hoped they were coffee. The pillow had no pillowcase. Had it been washed? The sleeping bags most likely had not been cleaned because our camp crew gave us a sleeping bag liner and advised us to use it.  

    The liner was designed for a person of beanpole build—narrow and very long—so it turned out to be a bit constraining for me. I opted to make sure I was completely clothed when I slept. That way I didn’t have to concern myself with stains, unclean pillows, and sleeping bags of questionable origin. 

    I heeded our guide’s warning about snakes and scorpions and zipped up the tent completely before setting out for the dining tent. After a delicious meal I took a short walk to see the camels and camel handlers arrive. The sun set, the Milky Way glowed, and I slept well in my little tent despite the dicey bedding. The silence of the desert was divine. This was the first of five nights.