What does the FDA need to know about living with diabetes?

What does the FDA need to know?

DOCasksFDAOn November 3rd we will experience a historic event.

The FDA will host a discussion between the diabetes community and senior FDA leadership from both the drug and device groups.

The topic? What does the FDA need to know about living with diabetes?

The discussion will be available via live webcast from 1-4pm ET (registration details coming soon).

The event will include a live panel of patients, both T1 & T2, and representatives from ADA, JDRF, and diaTribe.

As a community, we have a huge opportunity to present the many challenges we face each day, and it’s important to let the FDA hear YOUR opinions and make sure they’re part of the discussion.

Short survey

diaTribe has worked hard to create a survey that gives YOU an opportunity to let the FDA know more about your life with diabetes, the challenges you face, and what would be helpful.

Please consider sharing five minutes of your time to complete the survey. You’ll be making a huge difference in the world of diabetes.

The survey is only open for about FIVE DAYS – so please, do not procrastinate!

More Information

[gview file=”http://scottsdiabetes.com/wp-content/uploads/2014/10/flyerDOC.pdf”]

Doug Masiuk – Appalachian Trail With Type 1

To say Doug Masiuk likes to run is like saying Scott Johnson likes to drink Diet Coke. 🙂

Doug is all about empowering people with diabetes through his love of running. Not long ago he ran across America, and now he’s taking on another amazing challenge. We’re talking with Doug tonight on DSMA Live about what he’s up to. I hope you’ll tune in and hear about what you can do to help keep him moving.

Learn more about Doug and his mission at 1Run.org.

What are you doing for Valentine’s Day? Want to save a child?

A small group of people who I highly respect asked for some help in spreading a message. If any one of these folks asked me,  individually, for help, I’d not hesitate. So when they approached me collectively talking about how we could use social media for social good, I was all in.

Spare_A_Rose_1

Specifically, they’re looking to help the Life for a Child program, which is an International Diabetes Federation program aiming to take “contributions from donors [to] go to established diabetes centers enabling them to provide the ongoing clinical care and diabetes education these children need to stay alive.”

The idea was to take the typical “dozen roses,” so popular on Valentine’s Day, and save just one rose to spare the life of a child. “Spare a Rose, Save a Child” is simple: buy one less rose this Valentine’s Day and share the value of that flower with a child with diabetes in the developing world. Your loved one at home still gets flowers and you both show some love to someone across the world who needs it.

You can find more information on the idea here, and there’s always information available at the Life for a Child site.

Thank you!

The VIAL Project: Helping Lee Ann Thill

Screenshot of Lee Ann's blog post

More info on the VIAL Project

Lee Ann Thill is one of my favorite people around. She is super smart and plugs into the emotional side of life with diabetes with experienced perception.  She’s been wrestling with type 1 diabetes for a long time. She get’s it.

Looking to take her smartness to the next level, she’s gone back to school (hello, Dr. Thill!). She’s already 18-months into her doctoral program and has launched a pilot study that she hopes to develop her dissertation around. The pilot study is looking at type 1 diabetes and food and body issues — something that is probably more common than we might think.

Please take a look at her post, “Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project“, for more details and some background.

You can help by spreading the word about her pilot study, or even participating if you feel that it fits you.

Thanks!

Scott & Lee Ann, Ninjabetic weekend, 2010. Thanks for the pic, @saraknic!

Scott & Lee Ann, Ninjabetic weekend, 2010. Thanks for the pic, @saraknic!

Glu Survey on Type 1 Diabetes & Emotions

Today’s post is intended to help Bennet spread the word about a survey on MyGlu.  I am a supporter of what the T1D Exchange (of which Glu is a part of) is all about, and am happy to help whenever I can.

Straight from Bennet’s post:

A few days ago I wrote about research were patients were not seen as a stakeholder in research. There were some good comments and I encourage you to go read them. If researcher are part of the problem so at times maybe are patients. I think at times we don’t participate as much as we should (arguably because we don’t see the results as being to our benefit or even accessible.) We need to step up when we can. Here is place we can.  

Here is how to share your voice:

  1. Join Glu www.myglu.org (if you haven’t already.)
  2. Scroll down to the bottom on the home page, in the glu u section click October’s Survey.
  3. Look over the terms and agree as appropriate, this is being run by real researches so yes there is a real consent process. (I think that approachable research is a good thing). Enter you password so they know it officially OK with you. 
  4. There are a number of questions each has its own page. A few of pages is a little cumbersome yes but it is a good start and an important topic. 
  5. Participate, spread eh word and help make it better.

Full disclosure. I was part of a group that offered views on how to start this process and communicate it to the DOC. I would love to see it succeed not because I had a tiny part in getting the ball rolling but because I think patients voices need to be bigger part of the research process. Here is a chance to do that. Lets all help make the effort a success so they keep doing it.

Why not parents? As I said this is being done by real researches with review boards and all that that involves. Doing research with kids, even parents sharing information about their kids is anther level of dotting I(s) and crossing T(s). It should be.  Kids deserve to  be protected with a little extra diligence. In the mean time parents of T1D kids share this with fiends in the adult T1D community OK? 

Thanks.  

Help With a Petition: Diabetes Care in Jail

James Ward is in jail, and is being killed one meal at a time. I saw the story in diaTribe last month and wasn’t quite sure what to think about it.  Mr. Ward is, by no means, the picture of a model citizen, but that doesn’t mean he has to surrender the right to adequate healthcare while incarcerated.

Kelly Close and her team at diaTribe imagine that this situation is not unique, and that many inmates with health issues are not properly cared for.  This is certainly not the first time I’ve heard of dangerous diabetes care in prison.

According to Philip Baker, a retired public health administrator in Austin, TX, “There is a strong belief in prisons that healthcare is a privilege, and it can be yanked.  But that’s not the case.  The felon is to be incarcerated but not mangled medically.

I know this is a touchy subject for many.  All I’m asking is that you take a look at the petition.  Whether you sign it or not is nothing I need to know about.

More details can be found in diaTribe’s most recent issue.

Diabetes Scholars – Generosity In Action

The Diabetes Scholars Foundation does amazing work.  They raise money to help get families and young adults to Friends for Life conferences.  As if that isn’t enough, they also raise money to get young adults to college. I’ve written about what they do in the past.  I am a big supporter of them, and appreciate all of the hard work they do.

At each Friends for Life conference, Diabetes Scholars holds some sort of fundraising event. I have attended for the past two years. Each year, at each event, I am blown away by the generosity displayed. The money raised at the Friends for Life events goes directly to bringing families and young adults to future Friends for Life conference.

These conferences change lives. They change lives. Don’t take my word for it.  Have a look at just some of the blog posts in the diabetes online community about this year’s conference.

I’m blown away by the items that were donated, I’m blown away by the number of people that attend, I’m blown away by the money raised. I’m just blown away by all of it.

I’m writing this to give you an idea of what exactly happens at a Diabetes Scholars event. Not enough people know about it, and that is one small area where I can contribute.  Sharing news of good people doing good work is something I am happy to do.

There is a live auction, complete with an auctioneer!

Cool, right?

There is also a silent auction, with donated items lined up, from end to end, on both walls.  The number of items given to help bring people to Friends for Life is amazing.  I grabbed a few pictures, but they don’t do the event justice.

I was able to snag, with the help of Kelly, a cool necklace for my wife, for about $25.  A great deal, and the money goes towards a great cause.  I only wish I had more to spend!

(Big shout out to Jeff Mather for helping me figure out how to work my blog…)

How did they do this year?  Straight from Mary Podjasek, just a few days after the event (“Howl” was the entertainment – dueling pianos):

After paying Howl and the Marriott, it looks like we cleared $36,000. This means we can bring 25 families and 5 young adults next year. This year we brought 22 families and 7 young adults but had almost 100 applications. We would love to one day be able to bring everyone that applies. There is such a huge need. Thanks to everyone who helped to make our event such a success. Let’s try for $75,000 next year!!

Way to go!  As she said above, there is such a huge need.

How can you help?  Spread the word. Donate auction items.  Donate money.  Attend their events. Spread the word some more.  There are lots of ways you can help, even if you are not in a position to help financially.

Not enough people know about this great organization and what they do.  That is something I can help with.  So can you.

Diabetes Scholars – Howl at the Moon!

Howl at the Moon!I’m posting this on behalf of Mary Podjasek, President of the Diabetes Scholars Foundation.  Her mission in life is to help bring more people to Friends for Life (not to mention college scholarships), and that is a mission I support 100%.

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Each year, Children with Diabetes hosts a spectacular diabetes conference where thousands of people come together.  It’s an opportunity for individuals, impacted by diabetes, to increase their overall knowledge of diabetes management, receive up-to-date research information and build a lifelong diabetes network.

Unfortunately due to economic situations, some families will never have the ability to attend a conference and participate in this very unique experience.  The Diabetes Scholars Foundation (www.diabetesscholars.org), a 501(c)(3) non-profit, is committed to changing this by providing conference scholarships to families in need.  For families dealing with economic hardship as well as a life threatening illness, the conference has both an immediate and long-term impact on them.  

The Diabetes Scholars Foundation is hosting a Howl At The Moon Fundraiser on Saturday July 7, 2012 (7:00 pm) at the Marriott World Center in Orlando Florida. Please join us for the most unique dueling piano experience in the country.  Come sing, dance and howl the night away as talented musicians perform your favorite songs.  This high energy live show is centered around audience participation and two dueling pianos.  Tickets to the event are $55 and include appetizers, two drinks and a silent/live auction.  Funds raised from this event will benefit some very worthy families, help us carry out our mission and continue our programs. 

We have the following opportunities are available:
$55 – Includes ticket to the show, appetizers and two drinks
$250 – Hip Hop Sponsorship – Includes acknowledgement at event, 2 tickets to show, appetizers & two drinks
$500 – Country Sponsorship – Includes acknowledgement at event, 4 tickets to show, appetizers & two drinks
$1,000 – Jazz Sponsorship – Includes acknowledgement at event, 8 tickets to show, appetizers & two drinks
$2,500 – Pop Sponsorship – Includes acknowledgement at event, 12 tickets to show, appetizers & two drinks
$5,000 – Rock N Roll Sponsorship – Includes acknowledgement at event, 15 tickets to show, appetizers & two drinks

Please consider supporting the Diabetes Scholars Foundation’s Howl at the Moon fundraiser and make an impossible dream possible for some very special families.  Thank you for your consideration

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Thank you for all you do Mary!

If this doesn’t quite do the trick for you, you can always make a general donation.  If you have a blog, or webpage,  another way to help is by grabbing the badge off to the right and display it on your site (link it back to http://www.diabetesscholars.com/)

December Dawn Phenom – Insulindependence

Picture of everyone lined up on spinning style stationary bikes at Lifetime Fitness

Spinning class in action!

I spent Sunday afternoon sweating it out with the local Insulindependence regional group.

Insulindependence is all about helping people, of all ages and fitness levels, be active with diabetes.

It’s a great mission!  Would your life with diabetes be different if you had a group of people around and available that were very educated about diabetes and exercise?

Last month we went for a walk (or run, for those who do that crazy stuff).  This month was spinning at Lifetime Fitness.  I am not a member of Lifetime Fitness, but the people at the front desk knew about the meeting and were very helpful about directing me to where I needed to go (past the salon, the full-service cafe, and next to the TWO indoor running/walking tracks).

Spinning can be pretty intense, but it’s totally relative to your level of fitness.  You control the resistance of the bike and how fast you go, so you can go at your own pace.  The goal is to push yourself past comfortable and make some fitness progress.

Insulindependence is all about just getting active, so you don’t have to be a super athlete in order to get involved.  The other thing that I am enjoying is exposure to different activities.  There are plans to do some strength training, to try snowshoeing, to experience climbing; all with a group of people who know and understand diabetes and exercise.

It was a great time, a great workout, and just plain good to hang with other people living with diabetes.  I’m hooked on Insulindependence events, and will make it to any and every meeting they have nearby.

It would be great to see you there too – or to hear about you attending an event in your area (they do this stuff nationwide).  Let’s get moving!

Camp Sweet Life – Diabetes Camp in Southern Minnesota

Scott & Dr. Larson

Scott & Dr. Robert Larson

Last weekend I bumped into an old friend.

I don’t even know how to properly convey the gratitude I have for Dr. Robert Larson.  He is the pediatric endocrinologist that took care of me and my diabetes for nearly twenty years as I was growing up.  Starting with me at age six or seven, going into appointments with me and my parents, all the way to me at age twenty-five and having to kick me out of his practice because I was getting too old.

In his defense, it was time to go.  Highlights magazine and those big wire frame toys with colored wooden beads were not quite my speed anymore.

Dr. Larson helped me with so much, and very little of it was the mechanics of diabetes care (after the first couple of years).   It was all about me as a person, growing up and learning about life first.  He helped me know my diabetes well enough that it stayed mostly out of the way.  He viewed me as the strong and motivated young person, rather than the rebellious and failing young diabetic person my inner critical voice had created.

Camp Sweet LifeThese days Dr. Larson is still helping young people to live well with diabetes.  He’s currently working in Mankato, MN, a city a couple hours south of where I am now.  In 2010 Dr. Larson helped start Camp Sweet Life.  A grassroots effort to connect kids with diabetes in southern Minnesota through a safe outdoor camp setting.

Year one was a single daycamp experience, ending in an all family cookout.  Year two, August 2011, camp expanded to an overnight and two-day camp.  Parents were able to stay for educational sessions, and younger children were offered a day-camp experience.  Activities at camp varied from swimming, archery, arts & crafts, tie-dye, and star gazing with their local planetarium expert guiding the way.

They are expanding to include many activities and year-round events in addition to camp.  This last year activities included fall hayrides, sledding, JDRF walk, and a back to school event at Wow Zone.  Earlier in November, Dr. William Polonsky (one of my favorite people in the world!) and Dr. William Tamborlane (Yale School of Medicine Pediatric Endo & Artificial Pancreas Researcher) came to Mankato, MN for a ‘Living the Sweet Life’ Diabetes Symposium.  I totally wish I would have known about this – I would have been there in a heartbeat.

They have a sledding event coming up on Sunday, January 15, 2012 at the Norseland Boy Scout Camp near Mankato, MN.  Keep an eye on their website (www.campsweetlife.org) and their facebook page for more information.

I’m so excited to watch this grow – I know it will be a huge help to many in the area.  I’m hoping to find some ways to help Dr. Larson and the group working on this.  It would be a fun way for me to show my gratitude and serve others with diabetes at the same time.