A couple of weeks ago, I got an email that I found uncommonly moving.

It didn’t concern a major research breakthrough or the rallying of the T1D community around the new diagnosis of a nearby child.

It was a message from one of the many bright and dedicated JDRF professionals that I have the excellent fortune to work with.

Smart Patrick wanted my opinion on a postcard invitation to the JDRF Family Fun Day in San Francisco.  A few folks in the office were debating the wording.  Did I think it better to say “families living with T1D” or “families affected by T1D”?

The invitation

No one loves linguistic nuance more than I.

“Affected by” felt more clinical, slightly removed.

“Living with,” though, felt more negative to me, as in “you’ll just have to live with it.”

“Affected by” felt broader, including grandparents and babysitters, whose lives are affected by the disease but who don’t “live with” it day in and day out.

Then again, “living with” is cleaner, more pithy, placing the emphasis on words like “families” and “T1D,” which deserve the invitee’s attention.

Now, this wasn’t me just going back and forth with concepts in my head.  This was a string of emails over the course of the morning.  I imagined Patrick debating these points and others with the good folks in the San Francisco office.  I had electronic evidence that a few more people–while also working hard at other projects–were getting in on the conversation.

The photograph was excellent, the graphics were first rate.  The message was very important to all of us.

I found it heartwarming and inspirational and impressive that the professionals in the JDRF offices are engaged at this level.

Their thoughtfulness is what makes each of our fundraising events nonpareil, while maintaining the organizational efficiency that means over 80 cents of each dollar spent goes directly to scientific research.

The linguistic nuance of course, goes beyond the question of one invitation. “Living With” and “Affected By” stayed with me through the afternoon.

In our family, Will is really the only one “living with” the disease.  That is how I think about it.  If he were four, instead of fourteen, that might be different.  If he were less willing or less responsible, I might still feel—as I did just after his diagnosis two years ago—more like I was living with the disease.  T1D, though, is mostly his to consider and manage.

The number of us who are affected by Will’s disease? That number is much larger.  It includes his sibling and Bill and me.  It affects grandparents and aunts and uncles—who have to wrestle with the question of getting their children screened, children who have a higher chance of developing the disease.  It involves his teacher and the classmates and buddies who are watchful and knowledgeable—thank god—and who know that if Will is “talking speedy” or “walking funny,” they should suggest he check his levels, and that the Smarties and juice boxes in his soccer team bag are not for the taking.

Ultimately, the difference between “living with” and “affected by” is minor and highly debatable.

But  I am just so grateful that JDRF has professionals who make it their job to carefully consider these questions.

All so that, some day, none of us will be “living with” OR “affected by” this disease.

The News:

People, we have lift-off!  A team at the University of Virginia has launched the first US-based trial of the artificial pancreas.

What This Means for the T1D Community:

I, personally, was very moved to read that 40-year-old Justin Wood, of Charlotteville, spent a night in a hotel on April 19.  This wasn’t just some overnight.  This was a vacation from T1D!

I have been waiting months–years?–for this outpatient clinical trial to begin.

And while I knew the process would be exciting, I had yet to tie the AP to a name.

Not only do we know “Justin Wood,” but we know “April 19.”  We know “UVA” and according to News Medical, we know that Wood “immediately liked the device.”

Isn’t that exciting!?

About his T1D Wood had said, ”It’s something you think about – either in the back of your mind or the forefront of your mind – almost constantly.”

About the device he said, “The operating interface was very slick and very fast.”

While there will clearly be changes to the AP, and while this first generation device may not be the cure that JDRF continues to strive for, this is a huge step forward.

One-hundred nineteen individuals will follow Justin Wood.  I will be so pleased to associate each and every one of their names to this exciting progress.

If You Want to Read More:

http://www.news-medical.net/news/20120514/First-US-outpatient-trial-of-UVA-developed-artificial-pancreas.aspx

http://www.jdrftalk.org/2012/03/23/outpatient-trials-for-the-artificial-pancreas-a-huge-step-forward/

On Sunday, May 20, 2012 in San Francisco, Doug Masiuk will begin an epic journey across the United States, running for 4 months from San Francisco to New York. Only 230 people have run across the US. Doug will be the first person with T1D to do so.

Doug will visit schools, camps and hospitals to meet with kids. He will speak with local and national government and business leaders to promote diabetes awareness and education. Doug speaks from the heart. Diagnosed at 3, he has never accepted diabetes as a reason to give up, give in, or simply stop.

Doug has successfully managed his diabetes for over 34 years. He is proof that lifestyle choices matter. When Doug first started running in 2008, he could barely make it down the block. Today he runs 175 miles a week and only requires a fourth of the insulin he used to need.

Communities across America will put on their sneakers and add their footsteps to this journey. Not everyone can run a mile but everyone can take first steps in bettering their health. Simple changes: 1 step at a time, 1 day at a time, 1Run at a time. Doug looks to meet people in their communities and to get them to out run diabetes!

Doug’s mission – 1Run – is a grassroots effort. Help 1Run make history. Support Doug as he does what no other type 1 has ever done.

3000 miles, 120 stops
May 20 to September 20
Major cities and stops include San Francisco, Sacramento, Reno, Salt Lake, Denver, Omaha, Des Moines, Chicago, Pittsburgh, Philadelphia, Trenton and New York

Visit 1Run.org, Facebook/1Run or Twitter @1RunAmerica to follow Doug’s progress and support him.

You can see Doug off as he starts his amazing journey on Sunday, May 20 from Golden Gate Park (intersection of Fulton and Great Highway)! Supports will gather at 9 a.m. and Doug will start running at 10 a.m.

. . . here are a few Wednesday Tip ideas!

• Change the lancet frequently. There’s a reason your endo told you to change the lancet daily.  Sharper lancets can hurt less.
• When your hands might be cold, opt for gloves! Even in a soccer game when the rest of the body is steaming plenty warm.  Cold fingers mean restricted blood vessels, which mean difficulty with finger sticks.
• Talk to your diabetes team about a meter than may require less blood–sometimes far less–for an accurate reading.

Readers–share any tips you might have!

Two weeks ago, I wrote about my daughter wanting to check her blood glucose levels because she was thirsty and peeing a lot and was worried–her chances being 1 in 20–that she had T1D.  Aidan was fine.

I wish I could report that my relief made for a blissful afternoon.

The heightened worry stayed with me into the evening.

As did the throbbing burning sensation in the tip of my ring finger!

As impossible as it sounds, the finger I pricked that afternoon to show how easy it was to test blood glucose, only felt only a little better the next morning!  The pain was a kind of nagging discomfort that seems entirely disproportionate given the tiny pinprick of red that was barely visible.

When I picked Will up from school the next afternoon, my finger still hurt.

After he’d told me that the basketball game got moved to 4:30 and that he’d gotten an A on a Latin test and I said that was great, I paused.

“You know what?” I said.  “I tested my levels yesterday because Aidan was worried.  I swear my finger still hurts.  Even now!”

I wanted to commune with him.  To remind him that I recognized how well he contended with a lot of difficult stuff.

Mostly, though, I wanted Will to say that I must have hit a nerve.  I wanted him to say he had calluses on his fingertips that prevented him from even feeling the ten daily finger-sticks.  I thought he might tell me he’d gotten really “good” at fingerpricking or that he was used to it or that I was a total wimp.

Instead, he looked at me while changing the radio from my music to his.

Will, about to experience some pain.

“It hurts,” he said.  “It always does.  One of my fingers hurts, kind of a lot, all the time, every day.”

JDRF is featured in AMC’s new original unscripted series called The Pitch! From the producers of Undercover Boss, the unscripted series follows some of the top ad agencies in the country competing for new business. JDRF’s episode, which airs Sunday, May 27 at 8:00 PM PDT (immediately following “Mad Men.”), will chronicle two ad agencies vying to best represent JDRF’s efforts to improve the lives of all people with type 1 diabetes (T1D).

Watch Jeffrey Brewer, JDRF’s president and CEO, along with JDRF’s executive vice president of development, Mania Boyder, and JDRF’s chief marketing officer, Scott McCormick, challenge the two agencies to develop a campaign in seven days that reflects JDRF’s recent brand refresh. The agencies are called to develop a grassroots digital campaign that positions JDRF as an organization focused on people with T1D of all ages, and at all stages of the disease.

Don’t forget to tune in to AMC on Sunday, May 27 at 8:00 PM PDT. For more information about the show, please visit www.amctv.com/shows/the-pitch. For a behind-the-scenes look at JDRF’s episode, please visit www.jdrf.org/thepitch.

Our friends at DiabetesMine.com asked us to help spread the word about their Patient Voices Contest. -JDRF

By Amy Tenderich

Innovation and patient-centered design are the driving forces behind the wildly successful DiabetesMine Design Challenge, but this year we’re shaking things up!

This year, we’ve just launched a new Patient Voices Contest in which e-Patients and hands-on caregivers can voice their concerns about diabetes device design directly to the Powers That Be!

The prizes for 10 winners of this exciting new contest are:

• an all-expense-paid trip to the 2012 DiabetesMine Innovation Summit at Stanford University in Palo, CA (taking place Nov 16, 2012)
• a brand-spanking new iBGStar from Sanofi-Aventis, the first-ever plug-in glucose meter for the iPhone and iTouch!

To enter, patients and caregivers simply submit a 2-3 minute video describing what they would like to see from diabetes device makers, and what issues they have with the current technology.

The 10 winners selected will attend this year’s DiabetesMine Innovation Summit as “delegates” from the diabetes community. They’ll have the opportunity to share their ideas and concerns with Pharma R&D, product designers, mobile health experts, investors, gaming experts, regulatory folks and other stakeholders.

The deadline for entries is June 12, 2012.

My name is Kathleen Fraser and I’ve been living with type 1 diabetes for 16 years. I’m very excited to be involved with diabetes research. My “coming out” of my diabetes closet started in 2002 when I first volunteered at the JDRF in San Francisco. I previously had no idea how much was going on in diabetes research and how vibrant the local type 1 community was. I attended events that were geared towards adults and families affected by type 1 diabetes and the knowledge I gained made me feel quite powerful in my life with diabetes. It’s true what they say, “Knowledge is Power”.

Over the last 10 years and now more specifically in my role at UCSF, I am fortunate to bring these types of diabetes focused events to the community and I’m writing today to tell you about a great event that UCSF and Mills-Peninsula are co-hosting on 5/22/12 in Burlingame.

I often wonder if we have made any progress in preventing type 1. It was very devastating for our family when my niece, Emily, was also diagnosed in 2005. I have 3 other nieces and nephews who do not have diabetes and I’m very encouraged by the work being done around the world with TrialNet type 1 antibody screening and the 2 Pathway to Prevention studies geared towards preventing or delaying type 1.

I know many people get excited when a new iPhone, iPad or app comes out and I have to admit the same sense of giddiness when small colorful meters and pumps hit the market a few years back!

Come join us at this event on 5/22/12 from 6:00 PM to 8:30 PM at Mills in Burlingame with your friends and family so that you can feel as hopeful as me about the future of diabetes prevention as well as get excited about the cool new gadgets coming out that will make managing diabetes just a little bit easier.

The event is appropriate for adults with type 1 and their children, children with type 1 and their siblings and their parents. Health care providers and school nurses are also invited to attend.

Hope to see you there!

Kathleen

For event details please click here.

“Remember when insulin was discovered in 1921, it WAS the cure!” says Pam Sagan, Greater Bay Area Chapter Executive Board Member and VP of Government Relations. “Strange how your definition of a cure changes the longer your loved one has been diagnosed.” Pam’s daughter, Piper, was diagnosed with type 1 diabetes (T1D) in 1989 at the age of two, long after the discovery of insulin. Even with today’s advanced treatments, Pam continues to worry about her daughter, especially now that Piper is a young adult living alone. She says, “the real cure, to me, would mean that I would only have to worry about her as much as I worry about my other children! It never stops does it? “

A retired Critical Care Nurse, Pam knows that staying active with JDRF will help improve lives and find a cure for her daughter and the millions of other people with T1D. She is tireless: since 1992, she has served on the Minnesota and Greater Bay Area Chapter boards. She has been a member of the national Government Relations Committee since 2000 and continues through JDRF’s fiscal year 2012. She served on the International Board of Directors for JDRF 2001–2007 and has been an active member of the International Board of Chancellors since 2007. She has chaired many national campaigns including New Member Outreach in 2003 and Promise To Remember Me in 2002 and was the Volunteer National Manager of Grassroots Advocacy 2003–2005. She has served three years on the National Nominating and Governance Committee. In addition to currently serving as VP of Government Relations here in the Bay Area, she presently sits on the Research Committee at the National level.

Pam’s daughter keeps her motivated to work hard in all of her efforts with JDRF. She says, “How I admire her ability to love life and endure the constancy of the struggle.”

I recently helped a friend move and due to a significant amount of physical activity that day, I suffered an insulin reaction while driving home. My blood sugar level dropped so low that I essentially lost consciousness and ran my pickup truck into two telephone poles along Reading Road.

As I was unconscious and my wallet was hidden, Officer Christopher had none of my personal information available to him once he arrived on scene. Thankfully he had been trained to locate my MedicAlert necklace and contacted the 800 phone number on my ID to retrieve basic information, such as my name. Fire Fighter Bullock then jumped on the line with MedicAlert to retrieve my medical record and was able to learn of my Type 1 Diabetes which helped explain the cause of the accident and protocol for my treatment.

I’m fuzzy on many of the event details but when I did come to, the responders praised my MedicAlert ID. I have been a MedicAlert member since February 1985, and while this is my first emergency incident, MedicAlert’s service delivered exactly as I hoped it would. Due to the training that MedicAlert provides to Police and EMS departments throughout the country, the response during my event was made much easier and faster.
I want to convey my sincere respect and appreciation, specifically for the actions of Officer Christopher and Fire Fighter Bullock and their crew members. Yet, more importantly, I want to honor all of our Cincinnati Police and Firehouses for the heroic work they do day in and day out in keeping our families safe and healthy.

Last, but not least, I also want to give MedicAlert my sincerest thanks for the service they provide – along with the training they offer our emergency responders and the information they provide to our responders in times of an emergency. The treatment and response during a medical event can be significantly expedited with MedicAlert’s assistance – I know for a fact, that this was the case during my accident and I wish to offer my sincere thanks to all parties involved.