Tag Archives: jdrf

Thank you for your support.

It’s that time of year again… the time when riders are out on their two wheeled vehicles, getting ready for the ride of a lifetime. Or lifetimes. Yours and mine.

These riders are training for the JDRF Ride to Cure Diabetes, which is held in several locations throughout the year. Today, I’d like to feature five riders, most of whom you probably know already, especially since four are also diabetes bloggers.

A rider needs to raise at least $2,000 to be allowed to join one of these rides. That’s the kind of money I can never even hope to raise, so the least I can do is support the riders who can (or who are close). I hope you’ll click on the links to their pages and help support their rides. The money they’re raising will go toward research to help make a future with less, and then hopefully no, Type 1 Diabetes. Here they are, in no particular order.
 
 
– Our first rider does not write a blog. But he has been featured on other blogs, including this one back in February 2014.

Bob Parant will be riding in Burlington, Vermont again on July 25. Bob’s a 43 year veteran of living with Type 1, and he never lets it get him down. Read his inspiring story here. And:

Support Bob’s Burlington, Vermont ride
 
 
– Moira McCarthy Stanford writes a compelling blog at Despite Diabetes, chronicling her life as the mother of a young woman living with Type 1 Diabetes. She’s been a tireless advocate for a long time, and three years ago, she participated in her first Ride to Cure Diabetes. This year, she’s participating in two rides—LaCrosse, Wisconsin on August 15, and Death Valley on October 17.

The best part for Moira will be in August, when her daughter Lauren will join her for the first time. Their stories are amazing, and you can help them both get to their destinations by supporting their rides. Here are the links:

Support Moira’s LaCrosse, Wisconsin ride
Support Moira’s Death Valley ride

Support Lauren’s LaCrosse, Wisconsin ride
 
 
– Jeff Mather is a beast of an athlete. He writes a very interesting blog at Jeff Mather’s Dispatches, and right now, he’s diligently working on training for a complete ironman triathlon: 2.3 mile swim, 110 mile bike, and a full marathon. All in the same day. All with Type 1 Diabetes along for the ride. He’ll be taking a break from his training (who takes a break from training with a 100 mile bike ride?) on July 25, when he’ll be in Burlington, Vermont for his latest JDRF ride, one of several for him in the past decade.

Support Jeff’s Burlington, Vermont ride
 
 
Jeff will probably spend part of his time in Vermont riding alongside Victoria Cumbow. Victoria writes at her self-titled blog about life with Type 1, her life as a new homeowner and resident of Nashville, Tennessee, and her absolute love of transportation on board her bicycle. Her first JDRF ride was two years ago in Death Valley, and she completed the Nashville ride a year ago. This time, she’ll be in Vermont, after already completing a sprint triathlon and a half marathon this year. Just… wow.

Support Victoria’s Burlington, Vermont ride
 
 
Last, but certainly not least, is Alecia Wesner, writer at SurfaceFine. In years past, she’s been a top fundraiser for JDRF walks in New York, where she lives and works. This year, she’s decided to give up sneakers for bike shoes, and head to Vermont for her first 100 mile ride. When I read what she writes about it, I think she may be unsure if she’ll make it. Regardless of what she says though, I think she’ll do great. And she’s bringing her sister along for the ride too!

Support Alecia’s Burlington, Vermont ride

Support Paige’s Burlington, Vermont ride
 
 
I’m not sure I know what else to say except how much I appreciate what these athletes are doing to help all of us living with Type 1 Diabetes. I hope you feel the same way, and I hope you’ll either join them or donate to help them on the ride of a lifetime. Many lifetimes. Yours and Mine.
 
 
 

JDRF TypeOneNation DC Research Summit. Where else?

Last Saturday, people from the USA’s Mid-Atlantic region living with and affected by Type 1 Diabetes gathered for another TypeOneNation Research Summit in Bethesda, Maryland, just outside Washington, D.C.

This was my third DC summit, and usually I go over all the presentations in great detail, trying to pass along the information I gathered on a wide variety of topics over the course of about seven hours.

Instead of doing that again, I think I’d like to ask you a few questions. These questions are especially for those of you with TypeOneNation summits coming up in your area soon, but also for those who may have skipped this year’s DC summit and want to know what it was like. So… Let me ask you:

Where else would you get expert advice and a chance to ask questions about diabetes and exercise, and the best way to handle both, from the amazing Gary Scheiner, author of “Think Like a Pancreas”?

Where else could you find out the latest on beta cell encapsulation, including updates on clinical trials and photos of the procedure actually being done?

Where else could you find out the science behind Emotions and Diabetes from the insightful Diane Herbert?

Where else can you get all of the above and an update on the latest in Artificial Pancreas development from the excellent (and humorous) Dr. William Tambourlane?

Where else can you discover what’s on the T1D research horizon from JDRF’s National Director of Research Investment Opportunities, Tom Brobson?

Where else can you get all of this plus additional sessions, plus a great panel Q and A session with all of the presenters, moderated by the incredibly intelligent Molly McElwee Malloy?

Where else can you bring your T1 kid to share in a safe, fun environment with other T1 kids?

Where else can you meet other adults living with Type 1 Diabetes, who help share information, write blogs, and share tweets from the presentation with the world?

imageWith Heidi, writer at D Log Cabin, who will also be with us this weekend in Las Vegas for the Diabetes Unconference(!), and Jehan, who tweets from @gigi_tweets2.
 
 
Jenni_JDRFWith Jenni Maizel, who was tweeting from her own account and handling the @JDRFGreaterCP account too.
 
 
This is just a sample of what you get when you go to a TypeOneNation summit. I haven’t even mentioned the exhibit hall or the book signings. Personally, I was encouraged by the fact that there seemed to be a lot more adult T1Ds in the crowd of over 900 Saturday than there were in years past. There were also lots of D-Moms and D-Dads who are learning more than ever before, who were sharing with other D-Moms and D-Dads, and were also asking questions of Type 1 adults in attendance, who were sharing their experience. During this summit, there seemed to be as much interaction and information-sharing among the tables as there was on stage.

There are still TypeOneNation summits to be held in several places around the USA, including this Sunday at the Sharonville Convention Center, about five minutes from where I grew up in the Cincinnati area. CLICK HERE to find out where the remaining summits will be held and how to register (Free!).

Until there’s a cure, we have each other. Find out the latest on Type 1 Diabetes research, the latest in what JDRF is up to, and more, in a welcoming place full of people who are climbing the same mountain. If you haven’t made the commitment yet, let me urge you: GO.

Where else?
 
 
 

Like these links: College scholarships and the JDRF Research Summit.

I just have a couple of minutes on a very busy day, but I wanted to let you know about a couple of things that might be of interest. Hopefully, you’ve heard of these already, but if not, consider yourself informed.
 
 
This will matter most to people living in the USA’s Mid-Atlantic region, but these are being held all over the country this year. So if you’re not close enough to attend, look for a similar event in your area soon.

Registration is open for the JDRF Type One Nation DC Research Summit on March 7 in Bethesda, Maryland. Find out more about the summit in previous years by reading this and this.

Free to attend (a donation is suggested), the summit offers speakers on a variety of topics including the latest Type 1 research, JDRF’s continuing mission, how to manage your diabetes through exercise and stress, and much more. As in past years, there will also be a kid’s track and a teen track, so the young ones won’t be bored while all of the adult stuff is going on. In addition to that, there promises to be an exhibit hall full of the latest information and products. I’ll never forget how swamped the t:slim table was last year.

This year’s event will also include two optional morning workshops: One on managing diabetes through sports and exercise with Gary Scheiner, MS, CDE of Integrated Diabetes Services. He was last year’s AADE Diabetes Educator of the Year, and if you haven’t seen Gary do his thing, let me tell you… you don’t want to miss the valuable information he’ll provide.

The other morning workshop will be Taking T1D to School, featuring a panel of specialists who can help give you all you need on planning and preparing for each year as your kid works their way through the school system. Featured speaker for this workshop will be Sarah Butler, MS, RN, CDE, NCSN, Director of Diabetes and Nursing Education for the National Association of School Nurses. In other words, she probably knows her stuff.

The other thing I will say about this get together is the same thing I say every year: If you’ve had difficulty connecting with other people living with Type 1 diabetes, or other families living with T1D, this is the perfect place to solve that problem. Last year, over 800 people attended this event, so if you go, you’re bound to make new D-friends. It’s a laid back atmosphere, usually with plenty of room to stretch out, and everyone there speaks your language. Did I mention lunch is included too?

To get the skinny and register for the JDRF Type One Nation DC Research Summit, go to:
http://jdrfsummit.org
 
 
Diabetes Scholars is accepting applications right now for scholarships! They currently have 11 scholarships to give away to high school seniors planning to attend a four year college, university, technical, or trade school. Some of these scholarships are for as much as five thousand dollars, so if you’re planning to go off to college (or your young adult at home is), now is the time to apply.

To be eligible, you must be a high school senior living with Type 1 diabetes, and a U.S. citizen or permanent resident. Applications will be accepted until April 15, so warm up your typing fingers and get the process started today:
http://diabetesscholars.org/college-scholarship/
 
 
I owe… I owe… it’s off to work I go. That’s all for now. Have a great weekend!
 
 
 

Meet Delia Whitfield.

It is my pleasure and honor today to introduce you to Delia Whitfield, Senior Outreach Manager of the Chesapeake and Potomac chapter of JDRF. She’s also Outreach Captian for the entire Mid-Atlantic region and Florida too, working with a large number of outreach staff. She’s a major part of getting the D.C.-area JDRF Research Summit off the ground every year. Her role is an important one, and it covers a huge population and geographic area. Did I mention that she’s also living with Type 1 Diabetes? On top of that, she’s one of the most positive people you’ll ever meet. It’s just impossible to walk away from a conversation with Delia without feeling better. I think her story is a good one, and it provides an example for others who might be thinking about making a career in the diabetes world.

I was able to chat with Delia by phone recently, and this is part of what we covered.

Delia… anything you want to tell us about your diagnosis?
DWhitfieldI was diagnosed when I was 21 and about to graduate college. I had all of the typical symptoms leading up to my diagnosis: thirsty, tired, and hungry. I was losing a lot of weight to the point that people were concerned and asking me if I was eating enough. One of those people was my roommate, who I vividly remember in the few weeks leading up to my diagnosis, was giving me funny looks every time I would make my regular late-night runs to the grocery store for more OJ and snacks! The final straw was when I went with some friends to a concert and had trouble seeing the band clearly. We were in the second row. The next day, I called to schedule an appointment with an eye doctor. It was a Friday and I remember telling the woman that I couldn’t go all weekend without seeing well. They squeezed me in that afternoon. At the appointment, I told them about how I had been feeling and that I was worried. They changed my prescription and sent me on my way. As I left the appointment, I called my mom, who had worked in the healthcare field for a long time. I had been telling my mom and my dad about some of my symptoms here and there, but I told her about all of them on that call and I think it hit her. She told me to go immediately the urgent care and get a finger-stick to check my glucose. I didn’t know what a “finger-stick” was, but I heard the urgency in her voice. I drove straight to the doctor’s office. It was there that I learned my glucose was over 600. They sent me immediately to the ER.

At this point, I knew it was somewhat serious. But, still, I was young and what I really wanted was to get in and out of the ER so I could still go out with my friends that evening. I hadn’t yet realized that not only did I have type 1 diabetes, but missing one night out with my friends was the least of my concerns.

So… you graduated college, and you originally went to work in the real estate industry. What eventually led you to JDRF?
After my diagnosis, I went through a pretty tough time adjusting and coming to grips with this “new normal.” I was angry. I was confused. I was scared. I was isolated. After months of my parents urging me, I finally went to a diabetes support group. I sat down and immediately realized that I not only was the only person under the age of 50, but I was also the only one with type 1 diabetes. One woman turned to me and told me that I was “lucky” because I was young enough to start eating healthy and exercising and reverse my diabetes. I left in tears, feeling worse than I felt before. If only I had “that kind,” I thought.

Thankfully, a few months later, I heard about this organization called JDRF that was dedicated to type 1 diabetes. It blew my mind that there was an ENTIRE organization dedicated to “my kind” of diabetes. I signed up to volunteer with my local JDRF chapter – the Coastal Carolina Branch (Wilmington, NC). I started going to events and helping out where I could. The chapter staff and other volunteers were awesome; I was hooked. Getting connected with the type 1 diabetes community was the single best thing that had happened to me since my diagnosis. It led me to accept my diagnosis and more importantly, it gave me hope.

Around this same time, my parents met Tom Brobson (JDRF’s National Director of Research Investment Opportunities) at a JDRF event. My mom asked him if he would be willing to talk to me since he was also diagnosed as an adult and was so knowledgeable on all things type 1. When we talked, he told me all about his personal experience with type 1 and what he does for JDRF. It was fascinating and I knew I wanted to work for JDRF. At the time, I was going back to school to pursue a nursing degree, so I just kept looking for opportunities to open up. A few months later, an outreach coordinator position opened up with the Capitol Chapter in D.C. And the rest is history.

What advice would you give to someone thinking about pursuing a career as well as managing their diabetes?
If someone is interested in a career in the diabetes field or specifically with JDRF, I would say start by volunteering. Volunteering allows you to figure out what you enjoy doing, engage and help people in the community who you can help, but it will also in turn help you. Getting connected with this community was the biggest game-changer for me not only in terms of management, but for me emotionally. Type 1 requires 24/7 attention, and takes up a ton of brain space. I didn’t realize how isolated I was when I was trying to do it on my own with no support network. I have learned some of the best tips and tricks about management from others living with T1D. I also have come to realize that for me, the balance of a good sense of humor (and not falling apart over spikes!), and leaning on others when you’re feeling a little discouraged, is huge. The biggest thing is, knowing you’re not alone! There are a number of ways you can get involved to the degree that you’ll probably know whether you’ll want to make a career of it. Everyone has different talents and strengths and I guarantee no matter what yours are, we could probably use them!

You’re Senior Outreach Manager for a big, big chapter. JDRF’s Chesapeake and Potomac chapter covers almost all of Maryland, the District of Columbia, Northern and part of Western Virginia, and a couple of counties in West Virginia. What are some of the challenges you face on a daily basis?
I think it’s making sure that JDRF has a greater presence in the large territory we serve. It’s tough knowing that there’s a large percentage of people in the type 1 diabetes community that don’t know that there are support programs (e.g. JDRF mentor program), resources (free toolkits and care kits for all ages and stages of diagnosis), and free outreach events (JDRF research summit) where they can connect with a community of people just like them. About 6 months ago, I spoke to a young adult that has lived with type 1 for 8 years, and he had never met anyone else with type 1. He didn’t have an endocrinologist and he wasn’t familiar with pumps or CGMs. I connected him with an adult mentor and he wrote me a note saying that it was “life-changing” for him. He now has an endocrinologist and recently started on a CGM! Because we do have such a large territory, we really rely on our awesome volunteers to help us get connected with their community and promote our outreach programs. We pride ourselves on working with a limited marketing budget so that we can reserve those dollars for research and advancing technology – conducting human clinical trials are very costly!

On the flip side, there are a lot of stigmas and misnomers about type 1 diabetes in the general public. Instead of looking at these situations as a challenge though, I’d call them good teachable opportunities. I think a positive spin helps me when I hear the insensitive, uneducated, or just plain ridiculous comments made to people with T1D, myself included! I was once yelled at and asked to get out of a cab because I had just given myself a shot and the cab driver did not accept “drug use” in his cab.

What are your goals for the future?
That I will be out of a job. That all of us working in the T1D community can close our doors because type 1 will be something that “used” to exist.

For me personally, I’ve finished two century rides doing the JDRF Ride for a Cure. I’d like to complete even more and do some other endurance races.

Finally… You were mentioned in Amy Ryan’s book Shot: Staying Alive With Diabetes. What was it like reading about yourself in print?
Amy is a very dear friend and an amazing person. When I first read that chapter, it was like an out of body experience! It was very humbling to read her kind words.
 
 
Delia, thanks so much for sharing with us! Your perseverance, your hard work, and your compassion for people living with and affected by type 1 diabetes is an example for all of us. JDRF, and by extension, all of us, are fortunate to have you in our corner.
 
 
JDRF could use your help in a variety of ways all year long. To find out more about how you can make a difference, go to JDRF’s volunteer page and learn more: http://jdrf.org/get-involved/volunteer/

Also, and you heard it here first: Next year’s JDRF Research Summit is once again coming to the Washington, D.C. area on March 7, 2015! Look for more on the summit as the year progresses.
 
 
 

Like these links, and keep the D-mojo going.

Welcome to Wednesday…

I’m going to throw a few links at you today to help you keep your diabetes mojo going strong. I promise: If you click on any of the links below, your requirements in terms of time and effort will be a scant two or three minutes apiece. Quicker if you read fast. Check them out:

You may remember me writing about a U.S. House of Representatives resolution (HR 3710—Medicare CGM Coverage Act) introduced last year. Well, now a bill to get continuous glucose monitors (CGMs) covered by Medicare is making its way through committee in the United States Senate. This one is Senate Bill 2689—Medicare CGM Access Act of 2014. Introduced by Senate Diabetes Caucus co-chairs Susan Collins (R-ME) and Jeanne Shaheen (D-NH), this bill aims to do the same thing: Protect the right of citizens on Medicare to keep their CGM. Make sure you get your senator to get behind this legislation, like, NOW. JDRF makes it easy by providing this link:
https://secure3.convio.net/jdrf3/site/Advocacy?cmd=display&page=UserAction&id=412

Just fill out the form, include your own personal sentiments (like, “I’m going to be Medicare eligible in 13 years… Don’t take away my CGM when I need it most!”). Click Send Now and you’ll have committed an act of Diabetes Advocacy before Starbucks can serve up your latte.

Got an extra minute? There’s also a petition to sign:
http://www.thepetitionsite.com/takeaction/776/978/446/

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Also: The U.S. Food and Drug Administration has proposed new guidance for Medical Device Data Systems (MDDS). Borrowing from the Strip Safely website:

These are systems that, in the FDA’s words, facilitate “the electronic transfer or exchange of medical device data from a medical device, without altering the function or parameters of any connected devices.” Translation: technology that lets data show up on a device other than the medical device itself. FDA believes that these types of MDDS introduce little additional risk, and the agency is therefore proposing to lessen the regulatory process for MDDS.

Face it: We would all like to have access, and provide access for our loved ones, to the data from our devices. This is possible, it’s helpful, it’s an idea whose time has come. Agree? Now’s your opportunity to have your voice heard. How do I know they’ll listen? I was contacted by the FDA about comments I posted earlier last year on glucose meter accuracy and post-market inspection.

You only have until August 25 to submit your thoughts. Get the skinny right here:
http://www.stripsafely.com/sample-page/comment-on-mdds/

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Finally… Just in case you forgot about it, don’t forget about the first Diabetes UnConference, taking place out in Las Vegas next March. Brainchild of Christel Marchand Aprigliano of ThePerfectD, it will be a conference of diabetes peers from all over, setting the agenda together in the first hour, and asking and answering questions throughout the weekend. I already have four ideas, at least one of which may have some merit. If you’d really like to attend a diabetes conference by People With Diabetes, for People With Diabetes, this might be for you. I understand rooms are filling up fast. This is really turning into a thing. Find out more about the Diabetes UnConference and register too by going to:
diabetesunconference.com

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So… what about you? Have you read or written anything lately that is awesome? Oh… I just remembered: Kelley at Below Seven just published this month’s list of Best of the ‘Betes blog posts yesterday. Now… Where was I? Oh yes… If there’s something that moved you recently, please be sure to leave a link to it below. I’d love to read it!