Life at Williams-Mystic

My housemate brought home some buddies from the marina today! Here at Williams-Mystic, we keep jellyfish (or jellies) as pets. The pictures here aren't great, but you should be able to see that we have three jellies - specifically, "comb jellies," or Mnemiopsis leidyi - in a jar.

Half Marathon in Philly

Spent this past weekend in Philadelphia with Insulindependence to run the city's Rock 'n' Roll Half Marathon. I missed being in Mystic, but really enjoyed meeting Type 1 runners and visiting the Animas insulin pump headquarters/factory in Westchester, PA, not to mention the opportunity to complete another half marathon. This was my third race at this distance, and my slowest, but who's keeping track?

At Animas hq

Before the race. Note - these photos are not mine... they were taken on someone's cell phone and uploaded to Twitter by Insulindependence.

The Williams-Mystic Offshore Field Seminar

 out on the bowsprit at sunset

Lots to tell, but little motivation to write right now... I am having so much fun learning and doing new things here in Mystic that it's hard to take the time to stop and share via this blog. For now, let me recount the ten days my class spent at sea, from August 30-Sept.9th. Traveling away from Mystic for field seminars is an integral part of the semester-long program that is W-M; we begin with an offshore voyage, then a West coast trip, then a Gulf coast trip. The offshore seminar is the longest (and, in a way, the most exciting) of the three.

We boarded the Sailing School Vessel Corwith Cramer in Boston on August 30th, sailed out of the harbor the next day, and sailed South of Cape Cod for almost a week before turning around and heading North to our final destination of Rockland, Maine.

Life onboard the Cramer was busy, and not always comfortable. I did get seasick, as did most of my classmates. There were some cold and wet hours spent on watch in the wee hours of the night, quite a bit of deck scrubbing, dish cleaning and floor sweeping,  frustrating moments when I didn't understand an order given, and did I mention the seasickness? All that aside, though, we really did have a wonderful time. Eventually we learned the names of the sails and which lines to haul on for each; we learned how to plot our locations on nautical charts, how to steer a course (harder than it looks), how to tie various knots, etc. and by the end of the trip, the Cramer truly felt like home.

We were divided into three groups for watches, so that a set of students and crew was always attending to steering, hauling and striking sails, looking out for other boats/hazards, performing hourly checks of the whole boat, recording weather observations on the hour, and recording scientific measurements every hour as well. The watch schedule rotated in such a way that no group was on the watch at the same time of day for two days in a row. So, every day was different in terms of when you got time to yourself to sleep and eat. Sleeping and eating were almost the only things we did when we weren't on watch!

A typical day for us at sea might look like this:
0300-0700: Dawn Watch covered by C watch (my group) - someone from B watch, who had been working the midnight shift from 11pm-3am, wakes me up at 2:40am and tells me that it's cool and foggy up on deck - "don't forget your hat." After getting dressed and rolling out of my bunk, I walk through the galley to see what midnight snack is this night/morning. Pumpkin pie - yum! I scarf down a slice as I walk on deck. C watch meets near the helm at 2:50; after the members of B watch give us a recap of the past few hours, they are relieved and go below to get some sleep. I take over the helm while one of my watchmates goes to the bow to serve as lookout; another one of us goes into the science lab to count and identify sea creatures that B watch collected during their watch. Within an hour, we'll work together to raise a few sails and take down others. Around 5:30am, the sun comes up and we take a five minute "sunrise break," admiring the light rise over the sea as we sip hot cocoa. Just over an hour until A watch takes over and we get to go eat breakfast.
0700: C watch is relieved by A watch - we go down for the second sitting of breakfast (every meal is served twice; once for the ongoing watch and others, and then for the offgoing watch plus the "lazy" watch that's neither ongoing nor offgoing). After breakfast, since we were on Dawn Watch this morning, we are also responsible for "morning cleanup" - so we get out the brooms and mops and sponges and hoses and spend maybe 30 minutes on our hands and knees getting everything into "ship shape." By 9am I'm back asleep in my bunk. Between now and lunch, A watch will do lots of science stuff up on deck, deploying various instruments to collect sea water, creatures and sediment so we can get a better sense of the environment we're sailing in.
1230: lunchtime for C watch and B watch
1300: B watch relieves A watch; A watch has lunch; I go up on deck to read
1430-1540: Class - we have class on the quarterdeck every day at 2:30pm
1600: Afternoon snack up on deck; after filling up on goldfish and grapes, I do some more reading before going back to my bunk for a nap.
1820: dinnertime for C watch and A watch. We (C watch) are on duty this evening from 7-11pm.
1900-2300: Evening watch

No sleeping while on watch! Good thing this picture was taken during class...

2300-0620: sleep, glorious sleep for me before being woken up for duty again - C watch has morning watch from 7am-1pm tomorrow.

Memorable moments on this trip:

- touching the sea floor  (we retrieved scientific samples of sediment from the sea floor)
- being stationed on bow for lookout during a "classic," "textbook" cold front passage, enduring heavy wind and rain and feeling very intrepid
- finding the North Star every night while on watch
- steering the Cramer through Cape Cod canal at night
- seeing sparkles of light in the water at night from bioluminescent organisms
- and much more!

I have to go read law cases in preparation for tomorrow's marine policy class....

Off to Sea

We're leaving Mystic at 2pm today to drive to Boston, where we will board the Corwith Cramer vessel and begin our adventure in the Gulf of Maine! Looking forward to a strange sleeping schedule, seasickness, and salty air...

Hurricane Irene: Bracing for the storm

I would have liked to write a general post about my first few days here in Connecticut for the Williams-Mystic program, but the weather has gotten in the way. There's a hurricane headed straight for us this weekend! 

It's pretty rare for a storm to hit New England like this; we're more likely to face blizzards and ice storms than tropical storms or hurricanes - and when hurricanes do make landfall on the East Coast, they usually weaken so quickly that the only impact the NE feels/sees is some wind, rain, and bigger ocean waves. That's been my experience, anyway.  This time is different, though: according to reports, Hurricane Irene is actually supposed to come straight through Mystic on Sunday. We have been busy all day today and will be busy tomorrow preparing sandbags, moving things out of basements, and securing our houses, not to mention the boats at port. On Sunday night we're supposed to hunker down together in the W-M Marine Science Lab, which happens to be a hurricane-proof building.

It's a little crazy to be packing up our houses, moving to the Lab for a night, and then to come back to our houses on Monday to unpack/repack before leaving for Boston on Tuesday morning to board the SSV Corwith Cramer and set sail for a ten-day sailing trip. Yup, we are following Irene out to sea... no need to worry. Actually, there really is no need to worry. We expect the storm to have passed fully by the time we shove off Tuesday morning. And the W-M staff will definitely abort or change plans in consideration of our safety.

Wish I could write more at this time... but I have to go help with dinner! We have cooperative living arrangements here, so I'm living in a house with three other people and we cook for ourselves and all that and it's been nothing but fun so far (never mind that this is only day four).

I'll post a more substantial update and intro to Mystic, complete with pictures, when we get back from the offshore voyage.

Concluding Summer

Today is move-in day at Williams-Mystic - where I'll be studying for a semester instead of attending Fall Term at Dartmouth - and that means summer break is over. The last few months seem to have gone by so quickly, and this summer as a whole felt really busy, even though I don't think I accomplished very much.
Highlights:

• Mooseman: my first Olympic-distance triathlon, at beautiful Newfound Lake in NH in early June. Was a bit nervous about the biking section, but it went very well and I had a blast. 
• "UofIN," or "University of Insulindependence": leadership training for Insulindependence captains at the organization's headquarters in San Diego, CA during the last week of June. Included three days of backpacking in Yosemite National Park. 
• Mother-daughter road trip: Mom and I drove up and down the California coast for a couple days after UofIN. We stayed at the amazing Treebones Resort in Big Sur and went sea kayaking.
• CWD: I volunteered with Insulindependence at the Children With Diabetes Friends for Life Conference in Orlando, FL during the second week of July. It was my third time attending this major annual gathering for families and health care professionals dealing with Type 1 diabetes. 
• A Night of INspiration: I hosted a fundraising dinner for Insulindependence in Bethesda, MD in late July. The event was a success in my eyes - we had a great turnout, a fun time, good food,  and a very positive response to the Insulindependence mission and vision, especially with the accompanying screening of the Triabetes documentary. 
• New Hampshire: first to Hanover to get a taste of Sophomore Summer, then to the coast for beach time, family time, and (best of all) whale watching!

And now I'm settling in to my new home for the rest of 2011 - Mystic, CT. It is a cute town that is rich in maritime history and tradition, not to mention great ice cream shops. More about Mystic in future posts...

Back from CWD; Now I really need to unpack

At CWD with Sam Talbot, who has Type 1 diabetes and was the runner-up on season 2 of "Top Chef." He gave a cooking demo at a reception on the final night of the conference.

      I am exhausted. After getting back from California on July 2nd, Mom and I had just a few days before getting on another airplane - this time to Orlando, FL for the Children with Diabetes Friends for Life conference (often abbreviated as CWD FFL). This yearly event is always fun but energy-draining, with over a thousand families affected by Type 1 diabetes descending on Disney World during a hot & humid week in July. 
      This was a business trip, in a sense, because Mom had to attend the conference on behalf of the company she works for and I was there to help represent Insulindependence. We just got back home yesterday, and fortunately we're not traveling any more until August, when we go to Rye, NH for a true vacation.
       I've got lots of stuff to catch up on over the next few weeks, including preparations for my Insulindependence fundraising dinner and getting started on that Swenson family history project. First thing, though, will be cleaning up my room, which is littered with diabetes supplies, clothes (I've decided I'm not buying any more clothes for the next 12 months), and books/things from my college dorm.

San Diego, Yosemite, and Big Sur

I'm still recovering/unpacking after an amazing two weeks in California.

The first stop was San Diego for "University of Insulindependence," a retreat-like leadership training program for volunteers, like me, who will be working for Insulindependence from 2011-2012.  It was awesome to spend time with Type 1s from all over the country who are involved in Insulindependence's different clubs: the Triabetes team, the Glucomotive team, and Testing Limits. UofIN was held at UC-San Diego, and most of the adults commented on how strange it felt "to be on a college campus again, after all these years..."! I was the exception, since I'm much younger than most of the other volunteers and am the only one who is still in college. Our days were chock full of educational sessions and presentations by leading experts in the diabetes field. It's great to attend a program like this and realize that yes, there is still more to learn about diabetes management! We also had plenty of hands-on learning experiences, and just plain fun, each morning and afternoon with group runs along the beach, surfing, yoga, pilates-style workouts, rock climbing, and snorkeling. We even did a lactate-threshold testing workout on the UCSD track one morning, with the famed Type 1 triathlete and coach Cliff Scherb.

After a few days of sessions in San Diego, each club headed out for a weekend "practicum" that was directly related to triathlon, running, or outdoor exploration. Exploring the great outdoors is the domain of my club, Testing Limits, and our practicum was a trip to Yosemite, where we spent three days/two nights hiking and camping in the Hetch Hetchy region of this national park. 

The Testing Limits group in Yosemite, June 2011. From left: Joanna Gerry, me, Carla Cox, Ben Meyerhoff, Ben Clements, Erin Clarke, and Jerry Nairn.

We spotted a bear on our second night in the park.

Me, with the Hetch Hetchy reservoir in the background

All in all, my time with IN was fun, challenging, and educational. Loved meeting new people, learning more about diabetes management strategies and practicing those strategies in the wilderness!

After Yosemite, I went back to San Diego to rendezvous with my mom, who had traveled there to attend the American Diabetes Association's annual conference. So began my second week in the golden state, as mom and I rented a car and began driving north with the goal of going sea kayaking in Big Sur. This was a whole 'nother adventure that I'll never forget!

Downtown Santa Barbara

driving on the San Marco pass (rt 154)

Our destination was Treebones Resort, with accomodations that I'd describe as "luxury camping" (or "glamping," which my mom likes to say because it's glamorous camping). Whatever you wanna call it, it's awesome. We stayed in a yurt one night, and a big round tent the second night.

Yurts are cool.

inside the yurt

I highly recommend Treebones as a place to visit/stay if/when you want to see this beautiful part of the California coast.

the tent we stayed in on night two. smaller than the yurt (and devoid of all creature comforts), but big enough to sleep nine people!

Mom in front of the tent, right before we walk up to the main lodge for dinner. The main lodge was where you went to use the bathroom/shower, eat meals, and sit by the fireplace to play cards or board games, or read.

nice campsite, huh?

Treebones' organic garden. This is why their food was so delicious! We did not mind at all that we were limited to eating all our meals in the main lodge, for the most part (since there wasn't anything else around for miles...)

yummy spinach and kale

The "human nest" - a very popular accommodation for two at Treebones.

The water was such a gorgeous clear azure color!

sporting my Insulindependence (IN) captain's shirt at the beach

 We were fortunate to be able to go sea kayaking at San Simeon Cove, right across from the famous Hearst Castle. Below, Mom and I with "Cubby," our guide.

Cubby knew everything about the tides, ecology and history of the cove. Although the background of this picture shows a pier, most of our kayaking excursion was spent in the company of otters, starfish and gulls, in and around caves and under cliffs. Our time on the water was unreal... I felt like I had stepped into the pages of National Geographic's Adventure magazine or something!

 After sea kayaking, we drove south towards Los Angeles, where we would spend our last night before flying out of San Diego the next day. Just a few miles from San Simeon, we stopped to look at Elephant Seals...

That night, we had dinner at the Inn of the Seventh Ray in Los Angeles. My mom used to work at this restaurant when she lived in LA many years ago.

Very new age-y. It's in a place called Topanga Canyon, which reminds me of that TV show "Boy Meets World," because one of the main characters was named Topanga and I always thought that was the most ridiculous-sounding thing!


And that was it.... my trip to California. I expect to be back in January 2012, to run the Carlsbad marathon with Insulindependence.

Off to California!

       I'm almost packed and ready to fly away tomorrow morning for two weeks of fun in the sun.
Take a look at the video below to get an idea of what I'll be doing from June 20th-27th:

      
       The main purpose of this trip is to attend "Insulindependence University," a leadership training program for this year's group of Insulindependence captains in the Triabetes, Glucomotive, and Testing Limits clubs. All the captains will meet for four days of training sessions in San Diego before splitting up for "practicum experiences"; I will be hiking in Yosemite National Park with the Testing Limits group from June 24-27.
       Then, I'm meeting my mom in San Diego and the two of us are embarking on a lil' road trip.... our goal is to drive all the way up to Big Sur, CA and back, but we'll see what happens. 
Looking forward to posting pics and stories when I get back!

Mooseman

I don't really have the time or the energy to write up a race report right now, but it's been over a week since the Mooseman International Triathlon  and if I don't post something tonight, I'm afraid I'll never get around to it! 

The past week and a half has been pretty busy. After taking my last final exam and moving out of my dorm in Hanover, NH on Friday, June 3rd, then doing the triathlon in Bristol, NH on Saturday, June 4th, and then spending two days driving from NH to MD, I was exhausted when I got home on the evening of June 6th. Still haven't quite finished unpacking.

Anyway, the triathlon was SO MUCH FUN. I went into it being just barely prepared - I had trained to complete the distance, not race it - so my main goals were to enjoy myself, stay relaxed, and manage my blood sugars. Check, check, and check!

Here's a quick recap and some photos....

Me and my friend Laurie in the transition area about 20 minutes before the start. Laurie's a fellow student who I cajoled into racing with me!

Before the swim in Newfound Lake.

The swim was long, but exciting - I had never swum in a wetsuit before race day (dumb move, I know), Newfound Lake was pristine and not nearly as cold as I thought it would be, and I was able to draft off of other swimmers successfully. After exiting the lake, my wetsuit came off in a flash (with help from volunteer "wetsuit strippers," the idea of which kind of freaked Laurie out), and I felt very cool and collected as I moved through the first transition. I held a JJ Twister Sports Bar in my mouth as I mounted the bike, and munched and pedaled my way through the first couple miles of the bike course; those first few miles were the only flat ones. I had been told about something called "Devil Hill" at mile 5, and had expected to have to walk myself and my bike up it, but was pleasantly surprised when this hill turned out to be no worse than one I regularly train on in Hanover, so I stayed in the saddle and got to feel tough as most of the athletes around me had dismounted their bikes. There ended up being lots of hills on this course, making it challenging but also fun, because most of the tough climbs were followed by speedy breezy downhill descents.

Cycling is my weakest discipline, so by the time I started the run I was really in the back of the pack. This turned out to be a huge confidence booster, though, because not a single person passed me on the run, and I was able to chase down quite a few athletes who had been way ahead of me on the bike.

I finished the race feeling pretty good. Was I totally spent? No. That's fine by me, though. I really took my time soaking up the whole experience and enjoying the beautiful scenery on the course, especially during the cycling portion. That leg of the race was definitely where I could have pushed harder - I'll do that next time.

Summer's here

Today started out horribly, but ended gloriously. 
The good: an early evening trail run followed by barefoot strides on the school football field. The hours between 4 and 7pm have always been "prime time" for me in terms of feeling really good and moving swiftly on runs. This workout was no exception. After stretching and putting my socks and shoes on, I had the genius idea of making a quick detour to the river to cool off. It was hot, and I had gone swimming in the river for the first time on Monday, and the thought of diving in and then laying out on the docks post-run was just too sweet to resist! 

The Ledyard Canoe Club docks on the Connecticut River

Now I'm getting excited for my open water swim in the Mooseman triathlon this Saturday. 

Today was the official last day of classes for spring term here at school, and it was the first day that the local farmer's market was open for business on the Green - pretty clear signals that summer is here!

Farmers market on the green - open every week from June to September

Finishing up my classes and enjoying the warm weather definitely made up for the rocky start I had this morning, which was marked by a blood sugar of 32 at 3am, followed by mass consumption of smoochies, followed by going back to sleep without brushing my teeth, followed by sleeping through my alarm and barely, just barely, turning in my final project for my 9am class on time. There were a bunch of other loose ends I needed to tie up before this afternoon, but now they're all (almost) behind me. The only thing standing between me and a resounding cry of "school's out!" is an exam for my political game theory class on Friday morning. Oh yeah, and a triathlon on Saturday morning. Then I'll really be done with this term, and be on my way home :)

Throwback to diabetes camp

I had the BEST idea last night. Ever. Didn't want to go to bed hungry but couldn't find anything in the dining hall that was just right to satisfy my snack attack. Cookies and milk might have done the trick, but then I thought of something even better: smoochies! What are smoochies, you ask? Sounds like I'm talking about kisses - nope, I'm talking about the best bedtime snack they ever served at diabetes camp.
I went to Camp Glyndon at Lions Camp Merrick in Nanjemoy, MD for maybe four summers in a row. Always lost five or ten pounds during the week-long session because the counselors were so careful about measuring every little piece of food we ate, and we ate six carb-counted meals a day: breakfast, morning snack, lunch, afternoon snack, dinner, and bedtime snack. We were also super active, playing water polo and capture the flag, canoeing, zip-lining and ropes-course-ing, etc., so we all had to lower our basal rates. And we never overtreated our low blood sugars, because low bgs were treated with four glucose tabs, or 1/2 cup of orange juice, and only if our blood sugars were under 100 fifteen minutes later could we have extra juice or eat a few graham crackers. Counselors checked our blood sugars every night at midnight, when we were (supposed to be) asleep, and middle-of-the-night lows were treated with CIBs - Carnation Instant Breakfasts. Your counselor would open a carton of milk, pour in the CIB powder, shake it up, and hand it up to you (I was always on the top bunk). Only if you were really low would you have graham crackers with your CIB! And that was it. We lived off of graham crackers, glucose tabs, orange juice, and CIBs when we weren't in the cafeteria.
Anyhow, I freakin' LOVED diabetes camp! Back to the smoochies...
Snacktimes at camp were never very exciting, except for the very last night, which was campfire/sing-along night. I remember my first year at camp I was shocked that they didn't give us s'mores at this campfire - because what is a campfire without s'mores? - but was placated by the campfire night bedtime snack: smoochies.
Smoochies are made when you put sugar-free chocolate pudding and peanut butter in between two graham crackers, and you freeze it. Doesn't sound awesome, just tastes awesome. The graham crackers become super soft and when they come out of the freezer these treats are so smooth and sweet and satisfying! So, last night, I walked into our student center's general store and purchased graham crackers and chocolate pudding (if only they'd had sugar-free pudding... oh well). A big jar of peanut butter was sitting on my desk in my dorm. And I made smoochies. And all was well.

Sorry I just get really excited by food :)

Rollercoaster Weekend

Whew! Where to start? Highs and lows all over the place - this applies to my blood sugars, emotions, and the actual physical inclines I've been traversing all weekend. 

Saturday morning - The bad: overslept and missed a 10k road race I had been looking forward to running. The good: my roommate dragged me to a local farmer's market where we bought GREEN DUCK EGGS from the cutest kid EVER. Also, said cute kid sold us delicious banana bread that had a rich yummy mocha cream frosting. Of course, my blood sugar shot up, then crashed from the banana bread. Not too upsetting, since I had expected as much and hey, I really should know better than to eat dessert for breakfast. 

Saturday afternoon - I'm getting ready to go out for a run when the skies open up and it starts pouring rain. Mildly upsetting. Luckily the weather cleared up in a short time and I was still able to hit the road trails! I ran on a loop dubbed the "rollercoaster" by the college xc team for its ups and downs. Those runners would have laughed their socks off at me had they witnessed my utter lack of confidence as I would go down one fork, then would turn around and go back and take the other fork, always unsure of myself even though I had run on this trail before.Had a low blood sugar early on during the run, but rather than bailing (like I usually do), I consumed my Clif shot gel and kept going.

Upon finishing the run - I was super muddy and happy and bg was 148. I drank some iced tea that may or may not have been sugary, took a unit of insulin and hopped in the shower. All good.

Out of the shower - Dexcom picks up a reading of 226. Not so good, but not bad, either.Went to dinner - didn't want to aggravate bg so limited the carbs - had salad and water. Took 4 units of insulin - this was an "overbolus." Should be good.
Two hours later, there is a freaking 393 on my freaking Dexcom! Bad!

My mood is often linked to my blood sugar - inversely. The higher I am, the lower my mood, and vice versa... unless the bg is super super low.

The bg ended up dropping steadily and stabilized before bedtime, and I had a fun Saturday night in spite of it all, but Sunday morning I was down in the dumps again after receiving some bad news. Our family's beloved cat, Toodles, passed away in the early hours of Sunday, May 22. I gave him the name "Toodles" when I was eight years old, when he came up to me on the sidewalk outside our house as a stray. He was the neighborhood cat before then, going from house to house for food and affection, but shortly after I started calling him Toodles (and "Toodle-doodle," "Toodle-dude," or "Toodley") he decided he liked the Narula house best. We always said "he adopted us," not the other way around. 

miss you already, Toodle-dude

Toodles under the xmas tree, December 2010

       He had a good long life - came to us at the age of six, according to the vet's best guesses, and he brightened our lives for over 11 years. I'm just sorry I wasn't at home to say goodbye :(
I could write a thousand more words about this character - he truly was a character! kind of like a real life, super sweet Garfield - but will refrain. 
       
Late Sunday afternoon was a long and hilly bike ride (38 miles, 10 more than I'll need to ride in my upcoming triathlon), but that exercise didn't stop my blood sugar from flying up again that night. Any elation I felt from finishing my first bike ride longer than 25 miles was countered by the disappointment of hyperglycemia. It was so frustrating to see the Dexcom graph creep up and up all the way to the 300's, and I knew I had insulin on board from dinner (for which I had overbolused anyway), and I knew the sugar would come down eventually. But damn, I hate being high! I could practically feel the glycation taking place in my cells, speeding up the aging process and causing destruction of my nerves, eyes, and kidneys...aaaaaahhh I hate this disease!

Epic fail?

From the Seeking Alpha website:

"The search for a non-insulin approach to treating type 1 diabetes goes on. Diamyd Medical’s (DMYDF.PK) eponymous vaccine for the autoimmune form of the metabolic illness has failed in a European phase III trial, wiping out four-fifths of the Swedish group’s market capitalization, more than $450m, in one morning.
While the company is still awaiting results of a US trial due in 2012 this setback, following recent disappointments with antibody approaches, dashes most late-stage hopes for novel ways to treat early onset diabetes (Otelixizumab another disappointment in type 1 diabetes, March 14, 2011). For Diamyd, it casts doubt on receiving any milestones or royalties from partner Johnson & Johnson (JNJ), leaving the Swedish group shouldering half of all development costs."

Monday's news that the Diamyd vaccine had failed in its European Phase III trial was disheartening, to say the least. My mother, who is employed by Diamyd and is working on the company's trials in the U.S., was understandably more upset than I was, because she believed so strongly in this treatment and had been so excited to hear the results of the study. When it came out that the results were not good - well, it was a big letdown for her and her colleagues, and I was sorry to see such all-around disappointment. 

The news has been somewhat demoralizing for me, too, although I hadn't expected it to be. I thought once, "Since when can we vaccinate against autoimmune diseases?" And I said to my mom, "Have any chronic illnesses been cured in your lifetime? In the past 100 years? Why is everyone SO SURE that diabetes will be cured?" 

Don't get me wrong - I fully support diabetes research (I especially enjoy being a research subject - participating in clinical trials has given me a greater understanding of my condition and a sense of empowerment and I highly recommend signing up to be a guinea pig for one of these studies if you ever have the opportunity!), but I am not waiting for any big breakthroughs. I feel like I've been informed a million different times that they cured Type 1 diabetes in mice. That's nice. Keep working - I'll advocate for federal funding for your research and if you ever get to human trials I'll volunteer as a subject - but I'm not getting my hopes up anytime soon. 

Although I honestly don't expect a cure for this disease, I would be shocked if one day the scientific community announced that they were going to stop looking for one. And I guess that's kind of how I feel about the Diamyd study and the reaction to it - everyone is just giving up and it's unusual, and sad.

I was surprised to see the word "failure" in so many headlines and hear the simple phrase "it doesn't work" in conversations. It almost seems as if this whole avenue of research, which has been pursued with great hope and enthusiasm by so many for so long, is just being given up on. As if, with the results of this trial, Diamyd and the wider diabetes research community have put up a big sign that says "Dead End." 

I never assumed or expected this treatment to work - but I didn't expect a conclusive NO GO from it, either.

               I've been hearing so much over the past couple years about Diamyd and its GAD treatment - so much that I should be able to sum up the concept of GAD in a few words on my own, but instead let me give you the description from the Seeking Alpha article:

“Diamyd’s treatment strategy focused on the presence of the protein glutamic acid decarboxylase (GAD) in insulin-producing pancreatic beta cells. Its hypothesis was the immune system in type 1 diabetics was overly sensitised to the protein, and the Diamyd vaccine, an isoform of recombinant glutamic acid decarboxylase, aimed to induce tolerance. The hope was to preserve beta function for longer and delay eventual insulin dependence, as had been demonstrated in phase II trials.”

                 

There was good reason to believe that Diamyd was on the cusp of developing something that could prevent and stop Type 1 diabetes. My mom wanted to have Diamyd t-shirts that said "In GAD we trust" on the backs. 

And now, as of Monday, everything has changed and there can be no more hope placed in this - at least that is what the news reports are saying. Let me note that Diamyd's U.S. trials are continuing, and maybe there are valuable scientific insights to be gained from this "failed study" that could still somehow help people with diabetes. 

From the article I quoted earlier:
"With enrollment already complete in the remaining diabetes trial it is likely to run to completion; if positive trends were detected in Europe, investigators may still retain some hope that the resources already committed will yield statistically significant results in US diabetics. However, investors are probably right to write off the Diamyd vaccine – positive US trial results would now be a major surprise. With its next-most advanced products in the tricky Parkinson’s disease and pain spaces, Diamyd Medical is reverting to a higher-risk, mid-stage development company, and one with significantly less value."

(The full article is here.)

My mom, in her role coordinating things for the U.S. studies, had these wonderful postcards and stickers made that say "Don't let type 1 diabetes kick you around! Get involved in diabetes research."

I hope the decision-makers at Diamyd don't entirely abandon their efforts to treat diabetes... this enterprise with the GAD vaccine was not just a branch of a business that can be shut down in a "let's cut our losses and move on" kind of way; people with diabetes around the world invested their emotions and energies into believing in this, and it's just so tough for them to suffer a conclusive letdown like this. I'm not sure if I'm advocating for companies like Diamyd to slowly but ambiguously reveal that their treatments aren't actually effective rather than being honest and upfront and saying "hey, this is the end," but that sure would have been easier to deal with. I think. I don't know.

Weekend in Maine

          Ah, to be by the ocean! East coast, West coast, a foreign coast - doesn't matter, as long as I can smell the salty sea air I am one happy girl. And this past weekend was a very happy one, not only because I spent it by the seashore but also because it was with people I love.
          My mom's side of the family had a big reunion in Ogunquit, Maine to celebrate my great uncle's 90th birthday. Relatives came from places as far away as Seattle, Santa Cruz and Scotland. Starting on Friday night, wine and tears just kept flowing, as they often do on these occasions.
          My great uncle graduated from Dartmouth in 1942, and there are several other "Dartmouth men" in the family... enough for my mom to insist on us all posing together for a picture yesterday. She even orchestrated it so that we held old photographs of the rest of the family's Dartmouth grads in our hands for the photo. As cheesy as it may sound, I love the fact that I'm part of this family called the Swensons, of Swedish origin and with the granite of New Hampshire in their muscles and their brains*! I'm looking forward to interviewing my cousins, aunts and uncles this summer for a project I'm pursuing, tentatively called "Growing Up Swenson," to document the family history (or maybe just a segment of it).
          The past few days have been like a mini-vacation. I pretty much forgot about schoolwork, kept my cell phone off, and stayed away from computers and the internet. The last thing I did before turning off my phone on Friday was check in on the @iDrevolution and @iDevents  handles on Twitter; the 2010-2011 Triabetes team was racing in Ironman St. George on Saturday, and I thought about them during my short swim session that morning, knowing that they've put in so many hours in the pool, on the bike, on the roads and in open waters to prepare for such an epic endurance event. I'm sure they're all celebrating their accomplishments today. Way to go, Triabetes. 
          Although I didn't get a whole lot of swimming, cycling or running in this weekend, I exercised just enough to keep my blood sugars happy and for my cousins to make remarks about my self-discipline (ha! if only I could be really disciplined and stop wimping out about late afternoon bike rides).
           If it had not been for this reunion, I would have been at school and my mom would have been at home in Maryland on this Mother's Day. Instead, we got to walk along the beach and go out for a nice breakfast together. A great way to end the weekend. Now, on to studying for tomorrow's anthropology exam! 

* lyrics from the Dartmouth College Alma Mater