November is National Diabetes Month

Check out this blog post from Kelly Kunik in honor of Type 1 diabetes day (November 1st) and National Diabetes Month: Diabetesaliciousness™: Dear People Living A Non -Diabetes Life::

I like what she wrote - it's a letter addressed to people who do not live with Type 1 - but am not sure I agree with the need for writing it in the first place. Is the general public obligated to care and know about diabetes?

The Artificial Pancreas: Hope on the horizon

I just signed the JDRF's petition urging the FDA to allow research to move forward on the Artificial Pancreas. An artificial pancreas, if it works, would be the most revolutionary advance in diabetes treatment since the discovery of insulin, says JDRF, and I'm inclined to agree.
Early this year I participated in a clinical trial in Boston for Dr. Ed Damiano's artificial pancreas research; being an AP research subject gave me hope but also despair for the future - weird as that sounds - because I can see the promise that this technology holds, yet it seems so far away from being perfected, and right now there are plenty of obstacles in the way of its progress. One such obstacle (or bundle of obstacles, depending on your perspective): the FDA. You can read more about JDRF's efforts to advance the AP project, and the frustrations we're dealing with, here:
http://www.artificialpancreasproject.com/

Sign the artificial pancreas petition here: http://takeaction.jdrf.org/site/PageNavigator/APAC.html

And learn more about Dr. Damiano's study in Boston here: http://artificialpancreas.org/Home_Page.html

Now, some notes and photos from my experience with AP research! (the notes part will come later)

Debut of the D.C. Dawn Phenom

Last weekend, I traveled home to fulfill one of my obligations as a Testing Limits captain for Insulindependence - hosting a Dawn Phenomenon event in the Washington, D.C. area. The purpose of Dawn Phenoms, in short, is for a local group of people with Type 1 to gather and exercise together. DPs can be pretty effective community outreach tools, and a lot of fun, if you organize them well. I've got the D.C. DPs scheduled for the last Sunday morning of each month at Sugarloaf Mountain in Maryland. Sugarloaf is a great spot to hike in the fall, and it has a vineyard where you can stop for cider, wine, cheese and crackers and other goodies before or after hitting the trails.

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.

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...

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!

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.