January 31, 2013

Joslin - Induced Pluripotent Stem cells from MODY Patients

Links
From Joslin:
Joslin scientists report the first generation of human induced pluripotent stem cells from patients with an uncommon form of diabetes, maturity onset diabetes of the young (MODY). These cells offer a powerful resource for studying the role of genetic factors in the development of MODY and testing potential treatments. 
For more details: http://www.joslin.org/news/Joslin-Scientists-First-Human-iPSC-from-Patients-with-MODY-Diabetes.html

Induced Pluripotent is a fancy way of saying the made them form adult cells not embryonic cells. They hope they can have these stem cells become beta cells. That matter because you can't go taking beta cells out of someone with MODY who needs all they can get. But if you grow them you can study how they are vulnerable to the immune system and maybe, maybe turn off that venerability.

Of course I could be wrong. I often am, please read the link above for details from Joslin.

Speaking of Joslin, John Brooks III the CEO of Joslin will be Lorraine's and my guest on DSMA Live 'Rents on Monday. Join us.




Diabetes, Parenting, College, Alcohol

Links
Part of the process of parenting is that the kids grow. - Earth shattering observation isn't it?

Growing means a process of separation and the kids moving to independence. Nature has some natural signals that this separating needs to happen. For example the teens can develop a odor parents may rather have a showered off, move out or both.

This is why college was invented. (OK there is also the higher learning thing too.)



College also has the party thing. With the keg. It isn't new. 

All parents of college kids need to talk with their kids about alcohol. Those of us with T1D kids need to talk about how alcohol and diabetes mix. Guess what T1D complicates it.

WHO WOULD HAVE GUESSED T1 DIABETES WOULD MAKE PART OF LIFE HARDER?

Our culture is awash in alcohol. It is insane to pretend otherwise. Our kids need to learn to navigate the world they live in and part of that world is lubricated by alcohol.

Just as your diabetes may vary your kid's attitude towards alcohol may. YDMV - Your Drinking May Vary. Sadly I fear this may be an area where parental projections of their kid's behavior may miss the reality of college. I think it is a lot better to talk about alcohol than assume it is not an issue and have it become one.



To help start conversations, we created DrinkingWithDiabetes.com with a grant from the Diabetes Hands Foundation. It is a resource for students and parents to get ready to talk. It is new and the site needs need feed back to become stronger. Your comments are most welcome.

Alcohol is a reality. Talk about it. Here. With your kids. 

January 30, 2013

The Big Story on Action News

Links
... well at least for us the Big Story on Action News is US! 

Delaney and I were interviewed for this story on AP last summer. (Sorry I couldn't get the embed code to work.)


I almost wish we were not part of the story because it feels self serving to like this so much. It isn't that they talk about AP it is that in doing so they talk about the emotional part of diabetes. Right there in the toss to the heath reporter,  "even for the most disciplined patient diabetes can take physical and emotional toll."

Yay baby! That getting into the news is enough. The rest is just gravy and they did the rest justice too.

So often we in the diabetes community get our collective undies in a bunch over some poorly reported story. Maybe we should rethink that. Maybe we chould go out of our way to connect with the good journalists, who "get it" and pass on an 'attaboy.

Thanks to the Action News Team for getting it right!

Think about it, what motivates you more, recognition for getting doing well or getting smacked in the nose with a rolled up newspaper?

So how about it diabetes community? 

Here is a link the health desk at Philly Action News: HealthCheck or send them a Tweet at https://twitter.com/6abc

January 24, 2013

Tab A in Slot B - Interoperability.

Links
Raise your hand if you have built something from IKEA.



OK so that is all of us.


We eventually get a table or chair together because it was designed to go together.

How awesome would it be if our health information was designed to go together? Or at least that subset of health information that is our diabetes information? That was the topic of conversation at the Diabetes Mine Innovation Summit and was the driving point behind my fantasy device post.

A recent post at MobiHealthNews.com takes this to the broader case of EHR under the title, Interoperability holds the key to EHR, mobile health success. They quote Chuck Parker of Continua saying;


Studies of connected health show that when patients incorporate mHealth into their lives — at home, work, and on the go — they recognize the relationship between their health behaviors and experience of health and are consequently better able to self-manage.
and 
The fact is, unless personal health devices work together with minimal effort, patients are unlikely to stick with mHealth tools, and the momentous opportunity for connected health will be lost.
Will EHR's need to become interoperable drive diabetes devices to do the same? Who knows. Tab A will only fit slot B if it is designed to do so.

Lets get back to that future. (Cheesy way to tie image the in.) 

January 21, 2013

Josh's January Update on T1D Cure Research

Links
Regular YDMV readers know I am a big fan and cheerleader for Josh Levy's site http://cureresearch4type1diabetes.blogspot.com. I like that someone smarter than me reads all these studies and like even more the reviews and discussions.

His January 2013 update is here: http://cureresearch4type1diabetes.blogspot.com/2013/01/possible-cures-for-type-1-in-news.html

Topics covered in detail include:
Kamada Alpha-1 Antitrypsin (AAT). 
This study is important for a couple of reasons.  First, because of the number of AAT clinical trials. I know of a five AAT clinical trials aimed at type-1 diabetes going on now.  That's a lot; more than any other single drug.
LCT Updates  
LCT is developing an encapsulated pig beta cell cure for type-1 diabetes. The coating allows blood sugar in, and insulin out, but does not allow the body's immune system to attack the beta cells. It also allows nutrients in and waste products out. This allows the beta cells to naturally grow and to react to the body's sugar by generating insulin which goes into the body's blood system. 
Update from Scott King on Islet Sheet Project 
An Islet Sheet is a specific beta cell encapsulation technique, similar to what LCT is trying to do.  Because Islet Sheets have not yet started human trials, I don't follow this research very closely.  However, I know others are very interested in it, and Scott King posted an update on his blog, which you can read here:http://www.hanumanmedicalfoundation.org/blog/2012/11/26/signal-breakthrough-islet-sheets-thrive-in-pig/ 

January 19, 2013

Glooko Charts

Links
Glooko has announced a new charting option, Glooko Logbook Charts. http://www.glooko.com/#charts-tab

It is an Excel sheet. You send data out of your of your iPhone/ iPod and get charts on your computer with Excel. (It did open in Apple Numbers but I didn't do anything in Numbers but open the sheet.)  Here are the instructions for using it. From the Glooko site:

  • From the Glooko Logbook app, send yourself a CSV file and open the file on your computer.
  • Download the Glooko Logbook Charts, open it in Microsoft Excel and save it to your Desktop. Click Enable Macros (on a Mac) or Enable Content (on a PC).
  • Import your Glooko Logbook app-generated CSV file by clicking on Load New Data File and selecting your desired CSV file.
  • Now it's time to play with your data! Set date ranges, view high and low blood glucose values, and start identifying trends.

  • Here is the thing. Glooko seems to me to have value because it gets data into mobile devices - those are the devices that folks keep with them all day. So pushing the charting out of the mobile device and back into a computer seems like it is going the wrong way, convenience wise.

    I like the idea of visual representation of user's data. Not a fan of all kinds of jumping through hoops of exporting, sending importing and a partridge in a pear tree to get there.

    I wonder if that is a function of the regulation of mobile apps on mobile and the timing of the guidance?

    January 16, 2013

    Study Suggest Stress a Risk Factor for T2D

    Links

    A new study has found that people who are regularly stressed are considerably more likely to develop type 2 diabetesin the future.  

    Analysis of a large UK survey by a team of European researchers found that people with higher levels of psychological distress were 33 per cent more likely to be diagnosed with the metabolic condition compared to those with low distress levels.

    January 14, 2013

    FDA, SLGT-2, EMDAC, T2D & DOC - Alphabet Soup

    Links

    Last week I had the privilege of giving public comments at a FDA hearing of a proposed new type 2 drug in the class know as SLGT-2. These FDA meetings go by abbreviation EMDAC. So I was the DOC's, T2D, SLGT-2, FDA, ENDAC guy - Stick that in your soup bowl.


    The drug in question is a new means of treating T2D. Instead of influencing insulin production or sensitivity, it prevents the kidneys from transporting glucose out of the urinary process, This recovery of glucose conserves energy in the body. DiaTribe has a nice little summary of the specific drug with links to more of their excellent and detailed reporting. If you prefer smaller bites of information here is a twitter search: https://twitter.com/search?q=Canagliflozin&src=typd.

    Probably for most of the millenniums that humans have been around this conservation of energy was an important evolutionary advantage.  Not so much today.

    By inhibiting this retention of glucose, patients on the medication excrete something like 100 to 300 calories of sugar a day. BG decreases. Significantly it only seems to happen at elevated BD levels.  When BG is in range the SLGT-2 isn't facilitating the excretion of BG or so I understood the presentation.

    Readers digest version: SLGT-2s helps T2Ds pee out excessive sugar but doesn't make'm go low.

    This may have a beneficial impact on weight. There are of course issues and the increase sugar in the urinary tract causes some increase in infections. YDMV.

    There hearings follow a set agenda:

    • The committee listens to at the drug sponsor's presentation (sponsor = company seeking approval.) 
    • The FDA responds with a presentation of their review.  
    • The committee then ask both a bunch of questions. 
    • Most of the committee are physicians but there is one patient representative. 
      • (The patient representative, at both the EMDAC sessions I attened, was fantastic. She did all patients proud. )
    • The public chimes in after lunch. 
    • The committee considers specific questions. 
    • The committee votes a recommendation to the FDA.
    This hearing had 5 people offering public comments, 2 were from the Diabetes AdvocatesKelly Close and myself. One was from the ADA, one was from the American Association of Clinical Endocrinologists. Finally one was with with a public interest group he helped start with Ralph Nader. (See my friend Scott Strumello's comment for more details, Thanks Scott for offering them.)With the exception of the public interest group affiliate, the public comments were about the need for drugs that get used, don't induce hypos and that while no drug is right for everyone, diabetes patients need options to consider with their health team.

    I had the privilege of going last - batting clean up as it were. I tried to be slightly humorous with my inability to pronounce Canagliflozin to put an real world  face on the potential patient users of this drug who probably can't pronounce it either. I tried to be clear that I was there as a member of an e-patient and advocacy group. This to suggest that there are possibly a lot of us who may benefit from the drug, even if we cant pronounce it. I spoke about my family history with different Type 2 medications programs to also suggest that probably there is a bunch of us T2D for who it may not be the best choice. Either way that is a choice to make individually with one's physician,

    My comments were influenced by listening to the sponsor and FDA presentation and my fellow public speakers. I mentioned Kelly Close by name and twice emphasized her points. 1) there are not enough diabetes specialist, as it took me 6 month to get an endo. appt. to confirm my T2D diagnosis and 2) we need drugs that people take, that work. I the speakers from the ADA and AACE about the fear of hypos that cause some patients to not take their all their meds. I mentioned that even those of us who know better may reduce our meds to avoid hypos, noting that a physician presenting in the morning said he himself did so and implied what do they expect form us civilians?

    Both the patient representative on the committee and a member of the sponsor's team approached Kelly and I after the close of the meeting. They thanked us for our comments.  Which was very kind.



    The room is a wee tad intimidating. I certainly don't yet feel totally comfortable speaking there. I will keep going and will become better at presenting there. I hope that other patients advocates continue to share views and I am happy to chat with anyone interested doing so at future sessions.

    Alphabet soup helps.

    Diabetes Art Day is Moving (Soon)

    Links
    Diabetes Art Day is Moving to February. After three successful years in the fall it is moving to the 
    First Monday in February. Great news of a way to shake off the February Blues! 

    Diabetes Art Day 2013 is February 4.


    Just a few weeks. 
    Start Your Art

    January 8, 2013

    Tandem and JDRF Agreement for Dual Hormone Pump

    Links
    Tandem and JDRF have entered into an agreement to develop a dual hormone pump.

    SAN DIEGO, Jan. 8, 2013 /PRNewswire via COMTEX/ -- Tandem Diabetes Care, Inc. ("Tandem") announced today a partnership with JDRF, the leading global organization focused on type 1 diabetes (T1D) research, to develop a first-of-its-kind, dual-chamber infusion pump for the management of diabetes. The partnership agreement is designed to accelerate the development of a next-generation, fully automated artificial pancreas system using therapies in conjunction with insulin.
    Looks a lot like a JDRF IDDP. Has all the right words, performance based milestones etc, just not the IDDP letter.  Full test here:

    http://www.marketwatch.com/story/tandem-diabetes-care-announces-partnership-with-jdrf-to-develop-a-novel-dual-chamber-infusion-pump-2013-01-08




    Lilly Again Gives $100k Support to Diabetes Scholars

    Links


    Thanks!


    Today Lilly announce a second year in a row of supporting Diabetes Scholars with a generous $100,000 contribution. Diabetes Scholars provides college scholarships and support for families attending Friends for Life. From the Lilly press release, "In 2012, the Lilly Diabetes scholarships went to support 21 students pursuing higher education as well as 10 families who attended the 2012 Friends for Life conference."

    You can read the full Lilly press release here




    Lilly is not alone is supporting Diabetes Scholars, Sanofi, Novo, One Touch and JDRF are also sponsors. Beyond these organization individuals and families also sponsor academic scholarships. An impressive display of last year's, scholarships, sponsors and kids awarded them is on the Diabetes Scholars site.

    The application and competition for the scholarship were rigorous demonstrating that there are a lot of talented young people who are not letting type 1 diabetes stand in the way of pursuing life's dreams.  Look at this list of scholarships, it includes scholarships in business, mental health, arts, healthcare, political science and more. Our son Connor is proud to have earned a Jay Franke preforming arts scholarship from Diabetes Scholars for his first year in Fordham University's Theater program.



    It is not just corporations, foundations and prominent individuals that support Diabetes Scholars. We all can. A fun way to help out is the Howl at the Moon event and auction at Friends for Life. Join the fun and come to the event or donate an auction item. Diabetes Dad, Tom Karlya, put on a great show as MC and auctioneer.

    Parenting a child with diabetes is all about putting the kid's dreams first and dragging diabetes along for the ride, not putting diabetes first and dragging down a child's dreams and aspirations. Thanks go to Diabetes Scholars and their sponsors for getting that and helping to make it happen.

    In the DOC we joke a lot about Prom. Let's make Howl at the Moon DProm. We can help more kids and families each year reach for their dreams in the process.

    January 7, 2013

    The VIAL Project

    Links


    More information is up at The Butter Compartment on Lee Ann's newest project. 
    From her site;
    VIAL Project combines some of the building blocks of my diabetes advocacy work – social media, creative self-expression, and food and body issues – into a social networking website for people with type 1 diabetes, and food and body issues to share original, arts-based work (art, photography, creative writing, video, etc.), and connect with each other online. Because this is a research project, I will be collecting and analyzing user-submitted content, including all creative expression, posts and comments, to identify themes that emerge. My objective is to increase understanding of website users’ experience: having type 1 diabetes and food and body issues; creating and sharing arts-based work on the website; and using a social media platform to connect with others who have type 1 diabetes and food and body issues.

    January 5, 2013

    Back online. Good bit by Josh Levy

    Links
    I had (have) computer issues. The iMac was in the shop. It just got out and seems to have the same problems. yay. go team. Anyway for now I am back in the land of the computing.  Anyone who says you can replicate the computing experience of a computer with an iPad is smoking dope.

    One of the first things I saw was this recycled piece form Josh Levy. He made out a case that refutes 'the generic drug will never be researched for a cure because there are no profits in it." argument we sometimes hear. Nice to hear a some logic.

    http://cureresearch4type1diabetes.blogspot.com/2013/01/funding-existing-drugs.html

    January 4, 2013

    Primary Care and Preventing T2D

    Links
    A lot of folks, particularly but not exclusively the T1D crowd, talk a lot about endocrinologist as the lead for diabetes care. Sadly there are not a lot of Endos and CDE are in short supply too. So what is a country to do with an exploding diabetes epidemic to do.

    Maybe primary care?

    A recent HealthDay.com speaks of the success of Primary Care  in treating diabetes. Even more encouraging is another pierce in InternalMedicineNews.com titled, "Primary care-based diabetes prevention programs reduce BMI." That article makes the case for Primary Care driven programs to develop healthier lifestyles.

    I suggest that the DOC can help shift the conversation about heath care needs to shift away from hyper confrontational political scare tactics of death panels to a more constructive conversation. Like: How to work with your primary care team to start managing type 2.

    The simple fact is that there are not enough CDEs. I do not understand the process of certification. To me it looks like a process designed to make it harder to become a CDE, not help address the shortage of educators. So many people will need to work with primary care. Lets help make those patient / caregiver conversations successful.

    January 1, 2013

    Links
    About YDMV
    2013 update.
    (Most recent modification 11.9.13)
    WHO 
    YDMV is a personal blog edited (when you read my spelling you may find "edited" is not be the right word) by Bennet Dunlap.

    I have a BS in finance and a masters in Health Communication and while both were awarded with honors, alert readers will notice neither of those makes me a health care professional.
    Guest post are occasional part of this blog when that happens the authors background will also be shared.

    I can be reached by email at:  Bennet (at) ydmv (dot) net
    WHAT YDMV IS NOT
    Your Diabetes May Vary posts are personal observations.  It is not and should not be taken as medical advice
    If you find something that may impact you care -  talk to your Doctor about it and follow her (or his) advice. 
    WHAT YDMV IS
    This is the miscellaneous ramblings of a family with two kids with Type 1 Diabetes. If you or anyone you know is a member of a Type 1 family, you know they are amiable but stressed out folks who are happy share their experiences on how they cope with the demands of living with diabetes with others who "get it," a phrase that here means poke, pee, inject, inspect, infuse to insanity.

    No two situations or diabetics (yes we use the word and no we don;t have an issue with it, the kids are artistic too - neither artistic or diabetic defines them, both help describe them) are the same or as I like to say Your Diabetes May Vary (YDMV). Hopefully we can help others stay current with diabetes news and more importantly feel connected in a way that helps families stay positively engaged with diabetes tasks.

    Take what you read here to your endocrinology team and talk it over with them. You with their consultation are responsible for your diabetes care. You have our very best wishes for maintaining some emotional stability in the process.
    WHY
    I have two kids with Type 1 diabetes, family with type 2 and I am someplace along the pre type 2 / type 2 continuum. Better diabetes care has become my passion. 
    WHEN
    Each post is dated and with it  any news, studies, press releases etc linked are also dated. Some posts are revisited and updated. Changes to content and updates are noted and dated in an editors not at the end of the post as I haven't found a way to have Blogger post last edit dates. See the end of this post as an example. I don't note and date spelling corrections because I make so many I would be doing nothing but posting the dates of spelling corrections.

    No formal publication schedule I try to post as often as I have a worthwhile comment or link to pass on. Typically a few times a week. 
    WHERE
    www.YDMV.net.
    PRIVACY
    I may share my medical information. I do not share medical information of others. I may link and comment about others blog post where they share their own information. For example the author often writes about her type 1 diabetes at Sixuntilme and I frequently refer readers to her or others who have disclosed their diabetes. The choice to disclose is theirs. 
    Guest post may contain information of the author at their discretion.

    Posting comments is a choice readers make. Doing so and the comments provided, may disclose information and links that enable identification. 
    I do not know or publish visitors to the sight, unless they choose sign up as a follower.

    As a general rule I discourage publishing email addresses where they can be seen publicly. It is an avenue for spam. Commenters are discouraged form publishing their emails as comments but I will not moderate them off. It is you choose, choose wisely. 

    The site host is Blogger. Currently we are using Google Analytics to analyze the audience of the website and improve our content. No personal information is collected from Google Analytics. 

    Both Blogger and Google Analytics are Google properties. For further information on the privacy policy concerning Google Analytics and Blogger, please go here, 
    http://www.google.com/intl/en_uk/analytics/privacyoverview.html  http://www.google.com/policies/privacy/?hl=en 
    I links others, current headlines from other sites and links to pages I value. I try to link ethical sites, they are responsible for their privacy standards.

    (Modification 11.9.13)

    MODERATION

    Moderator
    YDMV is moderated by the author occasionally and posteriorly. YDMV is not an appropriate vehicle for medical care and post here should not be considered as medical advice. Poster are for the most part civilians not care professionals. YDMV, including all comments, is not and should not be taken as medical advice. 

    Not your doctor.
    If you as a reader sees something here you would like to consider as a possible treatment option YOU SHOULD TALK TO YOUR CARE TEAM BEFORE MAKING ANY CHAGES. That is true of comments too, comments posted on this Blog should be designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.

    Public not confidential
    Consider your privacy. Comments are public. Once posted you do not have the ability to edit them. 

    Comments
    Internets users commenting on my blog must behave with respect and honesty at all times.

    Internet users may not post any commercial/advertising comment. (This is the most frequently moderated group, they get deleted.) 

    Internet users commenting on my blog must post information which are true and correct to their knowledge. We invite you to provide resources (references, links, ...) on health/medical claims when possible and relevant.

    Moderators Reserve the right to erase, without notification, any comment they would judge inappropriate.

    (Modification 11.9.13)
    ADVERTISING and POTENTIAL CONFLICTS OF INTEREST
    Funding
    YDMV is funded by my efforts and token advertising. Ads and conflicts are detailed below.

    Ads
    When YDMV runs an ad they will be separate from content, typically a side bar and noted as ads. If you would like to run and ad email me Bennet (at) ydmv (dot) net
    Potential Conflicts of Interest
    Consulting
    If I have a consulting relationship with an organization it will be noted here and footnoted in the body of post. 
    I Currently Consult with the Diabetes Hands Foundation, Diabetes Advocates Program. 
    I briefly consulted with MyGlu on research and how that could engage the online community. It stared as pro bono conversations and due to the time and effort given there was some financial compensation.

    I occasionally consult with Dr Joyce Lee on projects she is working on at UMich. (added 5/13)
    Travel Paid Events
    At times I am invited to social media meetings with industry. These are not compensated but travel and entertainment is provided but the sponsoring firm. I think these provide good customer feed back to industry. I participate and share my views. In any post about such events I will disclose the travel arrangements. I believe I behave as a patient advocate at such events and that is why I am invited.  
    I am confident that that while industry has its own interests, there are times where opportunities to further patient ends exist, even time when social media and industry can jointly help patients. 
    Stock Ownership
    Occasionally I may invest in individual stocks in my IRA account. If have a holding in a individual stock and write about that firm I will disclose that in the post. 
    I also have mutual fund holdings. I do not follow the details of the investments those funds and so can not report on their holdings at the the time of posting. It is conceivable I may have holdings, though those funds, in firms I comment on without my knowledge.


    Editors note: I made significant changes to this page on January 30, 2013 to help bring may documentation into line with HONcode Principles and am applying to join that program.  Minor changes are made as I see how bad my spelling is.