TrialNet: Now Online Sign Up, Local Blood Screening

TrialNet is an important way people can participate with clinical trials to study Type 1 Diabetes (T1D). Previously participants needed to go to a participating facility. The recently the National Institutes of Heath (NIH) announced expanded ways to participate. You can sign up online and have blood drawn at a Quest lab close to the participant, at no cost.

TrialNet needs at least 20,000 relatives of T1D people each year to support research. So we all can play a part in finding better treatments and cures. The first step is to roll up our collective sleeves and participate. Now that is even easier.

If you are connected to T1D, this is a way to step up and be part of doing something about it.

https://www.diabetestrialnet.org/webapp/OnlineScreening/OnlineConsent.aspx

Adapted from their website:

How Does Screening Work?

• Step 1:
 First TrialNet will ask some eligibility questions.

• Steps 2-3:
 TrialNet will verify they have your permission to screen your blood sample and collect personal information.

• Step 4:
 The Online Screening will ask for some basic family history information and a mailing address.

• Step 5:
 TrialNet will mail you a screening kit. Take your screening kit to your local Quest for your blood test. 

• 
  

• Note: Screening at Quest facilities is only available for persons located in the US, If you are located outside of this area, but still want to participate, please click here for more information

See answers to common questions about screening >

Who is eligible?

Anyone between the ages of 1 and 45 years with a sibling, child or parent with type 1 diabetes. 

Anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with type 1 diabetes.

JDRF Kit to Support Adults with Newly Diagnosed Type 1 Diabetes

From JDRF:

New York, NY, April 15, 2013 – JDRF announced today that it has created a new resource for adults newly diagnosed with type 1 diabetes (T1D). The Adult Type 1 Pak is a sling-style bag that will include important resources and information to educate, support, and inspire adults newly diagnosed with T1D, age 16 and above. In collaboration with JDRF’s generous sponsors—Bayer Healthcare, Medtronic, and Novo Nordisk—the kit is now available through local JDRF chapters, and is free of charge.

Adult Type 1 Pak Contents

The Adult Type 1 Pak was created as a part of an effort to ensure that all individuals newly diagnosed with T1D receive the information and support necessary to adjust to life with the disease. JDRF has found the Bag of Hope to be extremely beneficial to families of newly-diagnosed children with T1D, and is hopeful that the Adult Type 1 Pak will be just as valuable to newly-diagnosed adults. Each year in the United States alone, more than 15,000 children and 15,000 adults are diagnosed with T1D, and JDRF continues to work to expand its efforts to better support people of all ages, and at all stages of life with the disease.

More: http://jdrf.org/press-releases/jdrf-announces-new-outreach-kit-to-support-adults-newly-diagnosed-with-type-1-diabetes/

Art and Science on the Walls of LA

My impression of MedtronicDAF and the Getty Museum.

I saw some amazing things on the walls in Los Angeles. A 1667 painting that we were convince was an endo visit but may have been an EPT and guys with leather chaps and Harley gear visiting the Flemish gallery at the Getty.

Of it all, I liked the impressionists best.

Manet’s “The Rue Mosnier with Flags” was stunning. Painted in 1878 it strikes me as a relevant critique of public displays of nationalism while the veteran with crutches shows who may bear the costs.

I found Monet’s painting of light somehow, more real than actual light. Yet it was Desborough’s Depictions on the Principles I found most hopeful. His series of single page works are fine art.

Desborough?

Lane Desborough is part of the artificial pancreas research team at Medtronic. On one wall the team has posters detailing the principles that guide their work. They all signed the posters committing to the principles. Hanging on the opposite wall are brief, one page papers, illuminating their progress to waypoints on the journey the principles inform.

Note: We were asked not to photograph the documents as some 

content is proprietary. This image was provided by Lane.

I tried to read a few of the one page abstracts. Like the works of other impressionist masters, when you look closely what seems a clear picture of an event, place or light on water is something else entirely. Something possibly outside your expectations and possibly beyond your ability to comprehend. Step back and an image appears clear again.

Lane's team are serious scientists including PhDs from domains other than diabetes, like aerospace and industrial chemical refining. One had been in defense contracting. Their art is to understand and transfer variability from one place to another where it is tweaked and adjusted. For example aerospace understands autopilots. A plane can be moved deliberately through three dimensions, safely, with input from gyroscopes and navigational instruments. Chemical plants routinely crank out refined products and we think nothing of the catalysts and complexity involved. The team's work is to defend future patients from some of diabetes variations.

It is fine art. Engineering art. This team is bringing their experience to make an autopilot to refine blood sugar. They are guided by principles, post abstracts on the walls and when you step back an look at their art you can see that maybe there is an image of the future in their art. An image of a better future.

Lane sent me a video of a trebuchet he and his son build with Legos. That too is fine art and better father, son and dog interaction that managing a boy’s insulin. Being dad, like science is an art.  That art matters most, or at least that was my impression of what I saw on the walls in LA.



Notes: 
In a future post I will share more about the guiding principles with lanes consent but for me the reality is in the impression.

Also, Lane was clear that part of his process is to consciously work past the not invented her syndrome and proudly borrow from other domains. With that in mind please see my disclosure about MedtronicDAF proudly borrowing from a friend.

Nominate @Diabetic_Iz_Me for a Shorty Award #dsma

I am a huge fan of #dsma, the weekly twitter festival of all thing diabetes. (Wednesdays. 9:00 pm eastern time follow the tag #dsma) It is wonderful because Cherise is more wonderful.

You can show a little Love Ya Mean It by nominating Cherise too. 


You can go about it a few different ways:

• Paste @Diabetic_Iz_Me into the form:http://shortyawards.com/category/socialfitness and ad a reason why you nominated her.
• Send a tweet like this: I nominate @Diabetic_Iz_Me for a Shorty Award in #socialfitness because of weekly #dsma chat 4 living well w/ diabetes.
• You can also tweet shorter nominations like this: #shortyawards @Diabetic_Iz_Me #socialfitness she runs #dsma which is my weekly lifeline other diabetics and a variety of topic to live well

The contest wants you to be creative with the reason. A tweet without a reason for the nomination will not be counted. So don't forget that part, OK? We want votes to count.

The rules say a nomination must be relevant to the category. There is an easyone, Cherise is about as relevant to social fitness as is possible. Through #DSMA she helps people living with diabetes live health, fit, spiritual, emotional, rational, and irrational lives with all type of diabetes.

Here part of the category definition:

The #SocialFitness Shorty Award, in partnership with Anthem Blue Cross and Blue Shield’s Health. Join In., honors an individual who helps others to make healthy choices in their lives through their influence on social media. More here.

You can vote for Cherise in as many categories as you want, as often as you want, just make #SocialFitness one of those votes.

Only one nominee and one category per tweet.

ReTweets (RTs) are eligible provided the account and nomination meets all the other requirements.

Voting for Cherise in the same category more than once simply replaces the text of your original vote; it does not count as an additional vote. (Bummer.)


Come on DOC - share the love!

YDMV Nominated at WEGO

Award: Advocate for Another (http://info.wegohealth.com/advocate-2011)  

Link: http://www.ydmv.net/

Reason: Bennet is a father of two type 1 diabetics and has been an exceptionally active member of the DOC since he started blogging back in 2007. He's got advocacy credentials - fundraising for the ADA and JDRF, attending social media summits for Roche and Medtronic, meeting with politicians on a state and federal level - but more than that he offers the perspective of a dad trying to help his kids become well rounded people for whom diabetes is only a small part of their lives. Despite all his work, he consistently flies under the radar - which I'm sure is by design. He never conflates his experience as a caregiver with that of his Type 1 children. His humor, passion and intelligence as - for both his family and the DOC at large - part of the invisible support structure that provides individuals with a safe space to learn and grow.

Congrats! We hope you’ll join in the excitement and take a moment to nominate your own favorite Health Activists for any of the 10 Awards and share the program with your online community.

Learn more:

Check out all the awards (and nominate others!): http://info.wegohealth.com/awards-2011/

Download our quick sharing templates: http://info.wegohealth.com/awards-sharing/

Want to help pick the winners? Apply to be part of our Judging Panel:http://info.wegohealth.com/awards-jury/

Diaversary and our #T1Din3- "Bolus for Candy"

Halloween is our (first of two) diaversary. Spell check is having a hard time with the combination of diabetes and anniversary. That is OK spell check I know how you feel.

We have felt strange about it too, every year. I have found writing about it helps.

We haven'e always the same way about diagnosis anniversaries. It is like our diabetes has varied. At first we were still a little raw and then shortly after that first diaversary we got a second diagnosis and it was as raw as the first.  By now we are so far into the "new normal" that it is fairly close to simply normal.

Still Halloween is our day and Halloween brings out different responses in type 1 families. Some don't trick or treat, some fret about it, some buy back candy and then there is us. We eat the stuff. On nurses orders.

JDRF has a hash tag fest going on on Twitter, #T1Din 3. The idea is to share a T1 thought in three words. There is even a "Flat Stanley" thing to give diabetes the finger. We are all fairly sure it is "the wrong finger." (Not to telegraph one of our #T1Din3 offerings or anything.)

So anyway in honor of Connor getting sprung from CHOP our three words are, "Bolus for Candy."

We had great support at that first diagnosis. Here is a link to the story of Connor's diagnosis and the great care we received from our nurse at CHOP. She is the one who sprung him a day early so he could trick or treat and gave him instructions to eat the candy (as part of his meal plan.) 

DC Type 1 Diabetes Research Summit

The Capital Chapter of the JDRF brought together a collection of professionals who shared the research they are doing.  In most cases they also shared a personal connection that drive them to try to improve the lives of people living with type 1 diabetes.

In addition to the speakers there were a number of tables where advocates, pharma and researches could present there work in a trade show like environment. The organizers had a full kids program to allow families to participate without kids becoming overwhelmed by the scholar’s presentations.

For those with the experience, it was like a day at Friends For Life where you do all the research track presentation while the kids hung out (with supervision.) There was even a similar buffet lunch experience - the kids ate chicken fingers.

There were maybe three to four hundred people there. Pretty impressive for a cold Saturday in January.

I was happy to join with a number of other bloggers and made my first feeble attempt at tweeting in real time. Here the thing, I don’t quite know how to condense complex ideas into 140 character synopsis and both convey meaning and still pay attention. I don’t think I did either well - fortunately that wasn’t the point of the day.

I was very happy to see a JDRF local chapter take on such a significant roll in supporting the families who walk for JDRF. I was some what gladly drove three hours to attend and was impressed by the researches both in their work an in their passion driven by personal connections to type 1.  I think that connection gets lost. I find it compelling to know the guy running the study at BU on the bionic pancreas is motivated to make his child life better.

It was also enlightening if not encouraging to hear about the process of working with the FDA. The FDA is cautious. They are slow. They are careful. That caution can be seen as slowing down the process of getting advances in care to the market. However I think it is important to know about how the FDA approaches risk. It is good to know the JDRF is in regular contact working with the FDA to keep the risks of simply living with diabetes on the table.

I think it is appropriate and useful for the JDRF to work in conjunction with industry to help promising advancements get through that review process. Particularly those products that focus more on the smaller part of the diabetes market, those living with type 1.  In that context events such as this help clarify why JDRF should be working with the for profit side of the industry. Advances need to come to market.

I think that understanding the process of research, commercialization and approval is important. I think good communication helps both develop support for innovation over the long term and inspiration to do better with what we have in the short term.

I was very pleasantly surprised by the scope and quality of the Capital Chapter’s Research Summit. I am thankful for their hard work. I am appreciative of the sponsors support. I think the Capital Chapter of JDRF offers a model for other chapters looking to engage with those living with type 1.

theBetesNOW January Event

theBetesNOW event on Saturday was awesome.

Well all but the car curse.

After introductions Connor did a quick cool top three - three cool new things in the diabetes world. Having just earned a drivers license Connor talked about the freedom driving brings a teen. He also mentioned that with that mobility comes taking diabetes around with you. So the first cool thing was a gift from our good friends at Roche. Key rings that have a little holder for four gluco tabs. Everyone got a few to take home. Thanks Todd at Roche.

Connor pointed out that they can be useful and keep you from going low and hitting the house as you pull into the driveway. That happened as he came home from taking the SAT test that morning. Same car that got towed the day we had the last event. Bad karma. (get it karma - CAR-ma? ok sorry about that back to the event update.)

Ninja meters on a key chain were the number two cool item followed by... Art. Connor introduced Lee Ann Thill of Diabetes Art Day fame. Lee Ann talked briefly about how art stretches our minds to make connections out side our typical norms. She pointed out that is exactly the kind of thinking that makes diabetes care successful.

Genius.

She then led the group to stretch their brains and create some art. I brought some stuff, Colette from OmniPod brought some dummy pods and Lee Ann brought loads of supplies. A great time was had by all. The kids being more nimble both physically and mentally got right to it and created some wonderful stuff. We old folks tried to keep up.

It was hard to come back to reality. Fortunately we had Gary Scheiner there. After pulling a few tables together Gary led the adults and older teens in a round table discussion that was every bit as creative as the process of making art. He spoke briefly about CGM and pumps and then asked each person which they would choose if they could only have one. Opinions varied and this was Gary’s point. Understand what you value in your care. Don’t focus on what others think work to your own strength.


Genius again!

After some wonderful conversation we did manage to get Gary to talk a little about the the new online programs his office is offering. Called Type 1 University the program offers a variety of advance classes on different aspects of type 1 care. Both live and recorded hour long classes are offered. You can learn more by liking Type 1 University on Facebook or by visiting their web site at: http://www.type1university.com/.


As for the car, it is fine. It’s a 1988 Olds 98. Cars were made of steel back then not tin foil. The house has vinyl siding. Minor repairs to the siding will be needed when it is warmer.

Dear Kerri - We used a pumpkin

 Kerri asks,  "Who learned injections with an orange?" We did and we also used a pumpkin. Here's our first dx story written ages ago for the Thank Shoe Section of BadShoe.com.

Connor was just starting to learn the saxophone. His first public performance was in a school talent show.  I think he played Peter Gun. We went out to dinner, something Connor typically enjoys. 

He had a soda or two, used the rest room and felt crummy. He didn't eat. We figured it was stage fright. The next day he moped around drinking OJ and complaining he didn't feel very well.  So Mrs BadShoe took him to the doctor. They called for some blood work so the next day I took him to Quest for a blood letting first thing. 

They tried and tried to get blood and it took both arm to get what they needed. It was early on a school day but Connor didn't feel up to school. So we put on the Star Wars trilogy (the real originals with Harrison Ford not the stupid prequel movies.) Connor was semi conscious, drinking juice and going to the bathroom. 

I figured that if the doc sent us to Quest it was no big deal and we could wait for the results. Mrs. BadShoe and the doctor's office started feeling otherwise. Finally that afternoon she decided to take Connor to the local hospital ER. His blood sugar was off the chart. He was borderline conscious in DKA. He was shipped out to Children's Hospital of Philadelphia as soon as they could get transport.

So not a whole lot of hours after his first ever saxophone performance Connor was diagnosed diabetic. So it turns out it wasn't nerves about performing that had him feeling funny before hand.

Connor (Mom & Dad) needed some help learning what to do. Melissa was our nurse / trainer when Connor was at CHOP. She was very cool teaching us how to get started with Connor's treatment. She was more than happy to turn over the needle to Kim & I so we could stick it to Connor. She also was very good about helping him learn about what was going on. 

As you can see below, Melissa is the type who enjoys her work. 

Particularly when it is sticking needles into loud children like Connor.

It was a rough time at first. Connor was hooked up to this machine as they put fluids and insulin into him. He later came to mock it, and if you look, you'll see he stuck the pumpkin.

Melissa was very good about helping us not only the mechanics of what we needed to do but also how to go about it with a smile. As Connor picked up his louder than life sense of humor returned and found a happy audience in her. She was serious but not solemn and that was a big help.

Connor awarded her a BadShoe Pin and she went straight to looking at her shoes. Lots of laughs Melissa that is another part of the family web empire and your shoes seemed like you could walk on them all day - you pass.

Thanks Melissa. Melissa is part of the Children's Hospital of Philadelphia Empire. The scope of this operation would put Darth Vader and Emperor Zurg both to same. It is everywhere it is everywhere. I also seems that every where CHOP is it is an outstanding operation.

Little Help - Can Anemia Mess Up Diabetes Blood Glucose Readings?

Doh! I feel like Homer Simpson asking that.

Someone out there should probably hit me with dope slap upside the head.  Of course {fill in the blank - including anemia} has an impact on blood sugar. What is the name of this blog again?

How does it mess with meters?

Diabetes plays games and one is to make me feel powerless. This is one of those times and I need a little help.  I am curious does anemia mess up glucose meters? I would love some experianced feed back.

It is more than just the readings - does anemia stop the frogging meter from working at all? Does it make the meter throw off used strips like beads from a Mardi Gras float with nothing to show but error messages?

We use WaveSense Jazz meters at school. Over the past few weeks our school nurse reports increasing instances of meter errors. As in it takes 2-4-6 up to 10 strips to get a reading. This is an experienced nurse and kid with 6+ years since type 1 diagnosis. They have literally thousands of blood test between them. They know the ropes of finger pokes.

The kid had lingering cold. That with exposure to whopping cough led to a doctor visit.  The visit in turn called for a blood draw that showed nothing but low iron. Which in turn led to a more detailed blood test that isn’t back yet.

Meanwhile the nurse is getting a more and more checks that just fail to give a reading. 2-4-6-8-what don't we appreciate? Using boat loads of strips to get a single Meter Readings! Yeah BG!!

Oh and some consistency between readings would be cool too. Three days ago after a bunch of errors the nurse got a BG reading of 22. That seemed suspicious given the circumstances (a word that hear means: a lack of hypo symptoms factored in with prior tests that day, the amount of insulin on board and time since eating.) So being familiar with such circumstances, they tested again. Three minutes and another bunch of strip later the low transformed into a 308. I don’t think anyone wants to confuse a 22 and a 308. Certainly not our nurse. She is tip top.

She called and sensibly but timidly asked for another meter. I love her. No worries I could swap out one from home with fresh strips in minutes. Guess what? - That replacement had the same issues and more the next day.

Could this explains some of the resistance to checking we are seeing at home? Gee I don't know - finger pokes are not that much fun to begin with so yeah maybe having them not work could be frustrating.

So I dragged a Tru2Go ninja meter up to school today when they called (3rd day in a row!). Would a different blood electrochemical process make any difference? Yes - No problems giving a reading, we'll see what tomorrow brings.

Now I for one don’t think a kid should have to poke her finger 5-10 times to get a reading. Also all in all I would prefer not to burn through strips at a rate of 2 to 8 errors for each reading. And lastly and I know this is being really picky of me I would prefer not to see 280 point swings between hypo and hyper in three minutes.

I asked the 800 number if they were aware of any issues. The operator at the call center was sure it is temperature. I know the environment well so I know it isn't about temperature. I called WaveSense directly, they said they 'wanted to support' me in the use of their product but little else.  Nothing about low iron and strip issues. 

I can find academic articles on the subject: Error Rates Resulting From Anemia can be Corrected in Multiple Commonly Used Point-of-Care Glucometers and Anemia causes hypoglycemia in intensive care unit patients due to error in single-channel glucometers: Methods of reducing patient risk.  I guess is a very scholarly, Yes - anemia can mess up numbers. But it isn’t much more helpful than my opening Doh!  

How about any of you out there in the big wild blue yonder of the DOC? Does anyone have experience with low iron and meter errors? If so what did you do about it? (Other than cursing - Kerri says we can’t curse. I may have forgotten that.)