TypeOneNation

Thanks for Sticking with Us - Happy Volunteer Week

Amanda McKinney — Fri, 26 Apr 2013 13:31:00 GMT

Hello Instagram!

Amanda McKinney — Thu, 11 Apr 2013 13:25:00 GMT

We have asked you to tweet us, follow us, pin us, and read with us! Well I am excited to announce that we would love for you to ’gram us as well!

JDRF Advocacy is excited to announce our newest social media neighborhood, Instagram! The Instagram community might not be new to you—perhaps you’re already there—so it will be that much easier for you to find us. Follow us at @JDRFAdvocacy.

Every social-media platform has its own purpose, and here at JDRF Advocacy, we try to make advocating type 1 diabetes (T1D) research as easy as possible. The goal in our office is to break down as many barriers as we can between you and national policymakers. We want to make it as easy as possible for you to stay educated on T1D research progress and have your voice heard in Washington and beyond. That means that we come to you. There are JDRF advocates all over Facebook, Twitter, Pinterest, blogs, and now Instagram, so Instagram, here we come!

We’ve grabbed our cameras, and we are ready to bring JDRF Advocacy to you through photos.

Did you know that every second, Instagram users perform 575 likes and leave 81 comments? We like you, and we hope you like us, so we want to show you! By being on Instagram, we know we will get to know you better! You work hard each and every day, experience highs and lows; some days are better than others, and at the end of the day, we want to see what you are going through, so we can figure out how to make advocating a cure easier for you.

Sure, you might be thinking, why do they want to see my photos? Maybe you post photos only of cute cats napping or what you ate for dinner, but guys, get this, we want to see that. We want to see you. We want to see what you are doing and how you are living each and every day with T1D! So if you post a photo you want us to see, make sure to include our handle, @JDRFAdvocacy and/or the hashtag, #JDRFAdvocacy.

Albert Einstein said that “Creativity is intelligence having fun,” so later this year, we will have an Instagram contest. That is all I will leak right now, but to stay in the know, make sure you are signed up to be an Advocate and follow us on Instagram so you are the first to know when we launch the contest.

Until then, remember: “Life is like photography; we use the negatives to develop.”

Note: This blog was originally posted in Countdown

Thirty Years Wiser: How the DCCT trial continues to nurture the landscape of type 1 diabetes science

Tara Wilcox-Ghanoonparvar — Mon, 01 Apr 2013 16:08:46 GMT

In 1983, a trial began that would forever alter the standard of management of type 1 diabetes (T1D) and serve as a stepping stone to future research advances—and as we mark the 30th anniversary of the trial’s inception, we are still learning from the study.

The Diabetes Control and Complications Trial (DCCT), a 10-year multicenter clinical trial, studied 1,441 people with T1D for an average of 6.5 years each, to examine whether intensive versus conventional methods of blood-glucose control could affect one’s development of dangerous diabetes complications. In 1993, staggering results from the trial proved that intensive therapy—where participants kept their HbA1c levels as close to normal as possible through frequent monitoring and insulin injections—reduces the risk of complications such as diabetic kidney, eye, and nerve disease by 35-76 percent, compared with what was then considered conventional treatment of one or two insulin injections daily and one urine or blood glucose test per day.

The DCCT is credited for spurring a change in the way diabetes is managed. But its effects did not end there. Most of the participants of the DCCT volunteered for the follow-up study beginning in 1994, called the Epidemiology of Diabetes Interventions and Complications (EDIC) study. This subsequent research has continued to uncover insights that could impact people with T1D today.

In 2002-2003, EDIC researchers determined that the period of intensive glucose control during the DCCT continued to reduce the risk of microvascular complications 7-8 years later, despite comparable glucose control between the two groups of participants after the initial study. Coined “metabolic memory,” this phenomenon suggests that implementing intensive glucose control as early as possible could help reduce the risk of complications down the line.

In 2005, EDIC researchers reported another interesting statistic: DCCT participants who had undergone intensive treatment during the study had fewer than half the number of cardiovascular complications compared with those treated conventionally, throughout an average of 17 years since their enrollment in the DCCT. For the first time, research showed that intensive glucose control could have long-term benefits for reducing heart attacks, strokes, and cardiovascular-related death in people with T1D.

New insights into hypoglycemia and the genetics of diabetes complications are also forming from the base of data that the DCCT study provided 30 years ago. These studies and future ones highlight the importance of a strong investment in long-term research—an investment that has been made possible through funding from organizations like JDRF, and with governmental support through the Special Diabetes Program (SDP), which makes up roughly one-third of U.S. government support for T1D research.

As advocates of T1D research, we can help protect and increase critical funding through JDRF and the SDP, so that long-term studies have the resources needed to continue revealing information that could improve and save lives. In addition to advocacy, people with T1D and their families can help research advance by participating in clinical trials. For more information, visit the JDRF Clinical Trials Connection website: https://trials.jdrf.org/patient/.

JDRF Convenes Forum on the Psychosocial Burdens of Type 1 Diabetes

Gary Feit — Fri, 15 Mar 2013 20:13:03 GMT

JDRF recently brought together a group of 20 leading experts in the behavioral and mental health fields to discuss the range of psychological and social issues experienced by people with type 1 diabetes (T1D) and their families. Forums like this enable JDRF to stay up-to-date with the full spectrum of issues faced by people with T1D so we can better represent their needs in everything we do and improve JDRF-developed materials and resources and practical information about living with T1D. JDRF is indebted to Chip Halverson, JDRF board of chancellors’ member and parent of a daughter with T1D, who championed this effort and provided the financial support for the event. JDRF board member Nicole Johnson who has T1D and is an international diabetes consultant, advocate, and researcher of the psychosocial aspects of diabetes provided valuable guidance during the organization of the meeting. Both Chip and Nicole participated in the meeting sharing their personal insights with the other attendees.

It’s not news to anyone with T1D or with a family member who has T1D that this disease presents a number of unique challenges unlike those seen with other chronic diseases. Many of the unique challenges of T1D result in important outcomes that go beyond blood glucose control – they extend to a variety of psychosocial and quality-of-life issues affecting individuals and their families. Some of the factors that make T1D management unique among chronic diseases include: an intensive 24/7 regimen of blood-glucose management, the often non-private nature of testing and injections and using devices, the required attention to meal planning, food-related issues, and body weight, and the imprecise connection between blood-glucose management actions and the desired level of control. Because of these unique challenges, studies have shown that among chronic diseases, T1D has one of the lowest rates of individuals complying with their disease management plans. One study reported that 88% of HIV patients stay on their disease management plan – a high among chronic diseases – and that T1D patients were among the lowest at only 67% staying on plan.

The experts discussed how the unique aspects of T1D management result in a number of well-documented psychosocial burdens and quality-of-life issues. These issues affect everyone living with the disease, especially children with T1D and their parents, and adolescents and young adults. Reports of psychosocial issues range from mild symptoms to diagnosed psychiatric disorders. These may include; stress and distress, feelings of helplessness, anger, exhaustion, or embarrassment, disruptive behaviors, family conflict, eating disorders, substance abuse, anxiety, and depression. Milder symptoms are not as well-documented, but healthcare providers reported in a survey that 10-30% of children and adolescents with T1D experienced mild psychosocial symptoms. Multiple studies provide documentation of psychiatric disorders in people with T1D. Of particular concern, one study found that two-thirds of adolescents with poor T1D management also experienced psychosocial issues, providing evidence of the critical negative impact these issues can have on an individual’s management of the disease.

Numerous insights were shared about the reasons why psychosocial, mental health, and quality-of-life issues often receive limited attention during the routine care visits of people with T1D. The most fundamental reason noted was the limited coverage for behavioral and mental health care in the United States. Interventions to address the psychosocial burdens experienced by people with T1D add time to a healthcare provider visit and require resources that are not routinely reimbursed without a clinical diagnosis by a specialist. The experts also noted a lack of enough trained healthcare professionals to diagnosis and manage the psychosocial issues associated with T1D. This includes primary care physicians and endocrinologists who provide the routine care of people with T1D—and are most likely to observe such issues. The experts identified multiple interventions for psychosocial issues in T1D that are known to provide positive outcomes but are just not widely available due to the limited resources in the healthcare system to support their implementation.

Beginning a dialogue on this important, but little discussed, aspect of T1D is a first step for JDRF. These insights will help JDRF evaluate where we can use this information to better support all the needs of everyone with T1D and those affected by the disease.

We Heart YOU!

Amanda McKinney — Tue, 12 Feb 2013 20:41:00 GMT

Advocates, here we are, February 14, Valentine’s Day!
Happy Valentine’s Day to you and to your #1!

Here on the JDRF Grassroots team, we wanted to make sure you felt the love we exude for you today. We wanted to make sure you knew just how much we appreciate, love, adore, admire and genuinely like you! Yes, YOU!

You inspire us to come to work each and every day! This year’s Annual Report highlighted 42 milestones in JDRF’s 42 years, but really, we have millions; each and every one of you is an inspiration for us! You advocate on the Hill in Washington, D.C. and at home, in your district offices. You call, email and drive hours to make sure you get that meeting and that your legislators know how important type 1 diabetes (T1D) funding is to you and for that, we love ya!

Yesterday, our office held it’s monthly call with your chapter’s Advocacy Team Leader. We thought that moving forward; I’ll share some of what we talk about on these monthly calls so you’re always ‘in-the-know’!

New Member Outreach Initiative (NMOI)
There were over 90 new members elected to Congress last November. NMOI is a campaign to meet these members and introduce JDRF to them. NMOI kicked off last week and we have already completed three of the 90+ meetings, putting us off to a great start! If you know you have a new Congressional Member and would like to get involved, please register here!

Government Day
Advocacy Team Chairs and a few additional advocates will be meeting in Washington, D.C. March 16-19^th to storm the Hill. Leaders will be attending workshops to better equip them with the tools they need to advocate for T1D on the Hill and back at home. After their briefings and various sessions, they will take on the Hill.

Intern with Us!
The Government Relations office in Washington, D.C. is looking for Summer interns! To apply, you must be a student who has completed at least one semester of college! Get real-world office experience as you help us gear up for Children's Congress and the 2014 Promise Campaign. Email Claire at Cnash@jdrf.org for more information.

Spring Walks
Spring Walks have begun and we will be sending Advocacy materials to the Volunteer leaders for each Walk. We also host online trainings for people who might be interested in volunteering with Advocacy at their Walks. To learn more, please email Advocacy@jdrf.org.

So Advocates, that is what we have cooking in the Advocacy Office and we hope you can feel our outpouring of love for you! And as you finish reading this update; be sure to comment below with the name of your loved one who you advocate for!

Talked to you next month-XOXO
Amanda the Advocate

Pediatric Diabetes Registry Reveals T1D Increase

Shana — Mon, 11 Feb 2013 20:46:48 GMT

In order to prevent and ultimately achieve a world without type 1 diabetes (T1D), we must first learn more about the disease. One trend that has revealed itself in recent years is an accelerating rate of T1D, especially among younger children. Last year, the SEARCH for Diabetes in Youth study reported that the prevalence of T1D in people under age 20 in the U.S. rose by 23 percent between 2001 and 2009. Other studies have shown that in European children one to five years of age, the incidence of T1D is increasing at a rate of 5.4 percent annually.

This increase in T1D creates additional urgency for research to understand and ultimately prevent and cure the disease. It also speaks to the need for more studies to gather data about T1D incidence rates and how they’re changing over time.

With that in mind, new research from the Philadelphia Pediatric Diabetes Registry revealed the incidence of type 1 diabetes among children in Philadelphia under age 5 increased by 70 percent in the past two decades. Furthermore, the study found overall T1D incidence in the city’s children up to age 14, increased by 29 percent from 1985 to 2004 (the average yearly rate of increase was 1.5 percent). The research, led by Dr. Terri H. Lipman of the University of Pennsylvania School of Nursing, draws upon data from the only active U.S. diabetes registry, which Dr. Lipman has maintained since 1985.

While Dr. Lipman’s findings published in the recent issue of Diabetes Care, shed insight on the rising rate of diabetes in children in Philadelphia, they also highlight the importance of diabetes data centers in the U.S. and throughout the world. According to Dr. Lipman, improving and continuing research and data collection will help clarify the origins and epidemiology of these upward trends in pediatric diabetes. This knowledge will lead to a better understanding of T1D and will inform work to prevent and cure the disease.

Although JDRF did not fund this particular study, part of JDRF’s strategy is to drive research aimed at slowing and preventing the progression of T1D. As part of the program’s top priority areas, JDRF supports research studies following people over time who have, or are at risk of developing T1D to better characterize the disease process. JDRF’s recent News Blog entry, T1D Rise Among Youth Highlights the Importance of Renewed Research Funding shares an overview on such JDRF-funded prevention studies, including:

An Artificial Pancreas System in Action

Liz Cuebas — Wed, 23 Jan 2013 16:53:00 GMT

When JDRF started the Artificial Pancreas Project in 2006, the project was long on theoretical concepts but short on hard data. Scientists believed there should be a way to improve daily T1D management by connecting the reading from a continuous glucose sensor to control the operations of an insulin pump in a closed loop system – but the tools to do these experiments were limited and the path was unclear.

A few short years later, this area of T1D research, which aims to remove some of the impact of T1D from people’s lives by reducing dangerous high and low blood sugar levels and the complications that may result, has gone from a theory to a reality in widespread clinical testing. Not only are researchers continuing to refine this developing technology with the goal of eventually making it available to all people with T1D, but dozens of people with T1D have had the opportunity to test an artificial pancreas system by participating in human clinical trials.

The earliest artificial pancreas system trials focused on testing devices in a closely monitored setting to ensure patient safety. These trial participants stayed in a hospital for the trial duration and were followed closely by a medical team. The first rounds of trials showed promising results, but because the trials took place in hospitals, it was too early to conclude that an artificial pancreas system would be helpful with blood sugar management in a "real-world" setting, where people with T1D may face unpredictable circumstances and choices that can impact their glucose levels.

Last summer, JDRF announced a significant step forward in the development of artificial pancreas systems – ongoing clinical trials showed that artificial pancreas technology was proving successful in outpatient, more "real-world" settings. Study results released at the 72nd American Diabetes Association (ADA) Scientific Sessions revealed that participants in ongoing trials at international sites in France and Italy were able to use an artificial pancreas system for 18 hours outside of a hospital setting, while keeping good control of their blood sugar levels.

This past fall, JDRF had the unique opportunity to film the experiences of an artificial pancreas clinical trial participant at the University of Virginia. Tom Brobson, JDRF’s National Director of Research Investment Opportunities, was diagnosed with type 1 diabetes in 2004 and joined JDRF as a staff member shortly after that.

According to Tom, "Being diagnosed with T1D at age 44 felt like part of my life was being taken away - becoming involved with JDRF was like getting it all back."

Participating in clinical trials was another way that Tom could make a difference and help to advance T1D research. In 2007, he began participating in artificial pancreas clinical trials and returned in 2009 and again in 2012.

"I participate in clinical trials because I want to see a whole progression of advances leave the laboratory and become life-changing therapies for those of us with T1D."

Tom's third experience being connected to a functioning artificial pancreas system was quite different than the two previous times.

"In 2007," Tom explains, "I was in a hospital bed with wires running all over the place. We had to have two laptops running the software, my doctor had to check every single step the system wanted to make, and I couldn’t leave the room. By 2009, things had progressed, everything sort of fit into a fanny pack, there were still wires, but fewer of them, and I could walk around the hospital a bit – I even got on an exercise bike. The laptops were still running things but they were out of sight in a different room connecting via a wireless signal. All of this was needed because in these first attempts safety was paramount. It still is, of course, but in 2012, the laptops were gone and the system was running on a smartphone! This time, we left the hospital and went into the real world for three days."

As part of the 2012 trial, Tom was able to walk around town and eat out at restaurants to test how the device would function in situations that people with T1D face on a daily basis.

In the video below, you’ll see Tom’s portable smartphone artificial pancreas system in action and learn more about how JDRF has managed to efficiently accelerate this groundbreaking technology in just a few years.

(Please visit the site to view this video)

If you are interested in participating in a clinical trial, please visit JDRF’s Type 1 Diabetes Clinical Trials Connection at http://trials.jdrf.org. This is a service that provides information and matches people with T1D clinical trials for which they may be an appropriate participant. You can also find more information on artificial pancreas trials through the website of the JDRF Artificial Pancreas Consortium: http://jdrfconsortium.jaeb.org.

42 Reasons JDRF is Thankful for YOU

Amanda McKinney — Fri, 18 Jan 2013 20:16:00 GMT

JDRF was founded 42 years ago, by parents of children with type 1 diabetes (T1D) in 1970. For the past 42 years, JDRF staff and volunteers have worked together to fund research aimed at finding a cure, better treating and preventing T1D. This year, the JDRF Annual Report 2012 highlights 42 specific milestones in T1D research, awareness and advocacy. We celebrate these 42 milestones that are the result of your hard work! Just as it was back then, JDRF is a volunteer-led organization – and 42 years later, we applaud you, our volunteers and Advocates, for advancing T1D research and awareness to levels never imagined. For that we can only say: Thank You.

In our 42nd year, you arranged over 450 meetings with Members of Congress. You signed and sent the Artificial Pancreas petition to your family, friends, co-workers and neighbors. Thanks to you, over 100,000 people made sure the Food and Drug Administration (FDA) knew how important guidance on the artificial pancreas system is to the T1D community. And in closing out the year, just a few weeks ago, you mobilized with great force and urgency over the renewal of the Special Diabetes Program (SDP) before Congress adjourned for the year. Without your calls and emails and personal interactions and visits, $150 million per year for critical T1D research could have been lost. But you made sure it wasn’t – Thank You.

In the last 42 years, maybe we have been pushy, we sent you too many letters, faxes, telephone calls and now emails and we often ask you to drop what you’re doing and act right now, immediately. And in all those years, we have always counted on our volunteers and our advocates. Why? Because every time, we know you are always willing to help! We know that together, we will find a cure through continued diabetes research. Together and through our constant awareness efforts, we will let the world know of this insidious disease and we will make sure Congress knows JDRF and knows how important it is to fully fund type 1 diabetes research to better the lives of our loved one(s) once and for all.

So this year’s Annual Report is a celebration of 42 of the unique people, programs and signs of progress that compel people to join JDRF Advocacy and tirelessly work to accomplish our goals. JDRF has too many stories to ever tell them all, but rest assured, if we had all the space in the Library of Congress, we could start filling it immediately with the stories and many successes of your hard work and dedicated efforts.

We can never say it enough: so from our family to yours, Thank You for all that you do! We hope you’ll like the JDRF Annual Report 2012.

People with T1D Inspiring Others

Andrew Bell — Fri, 11 Jan 2013 19:13:35 GMT

Living with type 1 diabetes (T1D), to say the least, is no cake walk. Let’s be honest, it’s downright tiring and absolutely challenging sometimes. Despite this truth, and in the face of nearly impossible obstacles, people with T1D still do amazing things. And their accomplishments inspire everyone connected to JDRF to no end!

For example, Yahoo sports recently posted a story on Chicago Bears quarterback Jay Cutler. Jay, after being diagnosed with T1D over four years ago and in the midst of his NFL career, has taken it upon himself to raise money for T1D and also work directly with children living with the disease – all while still playing! Another recent news story focused on a woman in New Zealand, Winsome Johnston, who has lived with T1D for 78 years. Other people living with T1D who also have significant years of diabetes management under their belt know just how incredible an achievement this is. And speaking of milestones in a person’s life and others who are inspiring, 13-year-old Matthew Sherr recently raised more than $90,000 for JDRF by donating gifts from his bar mitzvah. Great job, Matthew, and congratulations on proving that it’s possible for a person with T1D to make a big difference at any age!

On a personal note, I’m quite proud of some of my recent accomplishments as a person living with T1D for over 19 years, including a hard-earned belt promotion in Brazilian Jiu Jitsu and graduating from a 500 hour yoga teacher training course.

So, if you’re reading this, and you are someone living with T1D, or you care greatly for someone living with it, JDRF has a number of forums where you can share your story and what you’ve accomplished while living with this unique challenge.

Tell us Who’s your #1? This page on the JDRF website gives you an opportunity to talk about those with T1D you're most passionate about.
Sign up for TypeOneNation, JDRF’s online community for people touched by T1D.
Tweet to JDRF and share on Facebook.
Connect with others through your local Chapter of JDRF.

Finally, continue to spread awareness, support T1D research, and keep trying to do good things while dealing with this difficult hand that’s been dealt. Your story, like Jay Cutler’s, Winsome Johnston’s and Matthew Sherr’s, helps inspire others and keeps this sometimes seemingly impossible course ahead navigable.

U.S. Congress Votes to Renew the Special Diabetes Program (SDP)!

Hasan Shah — Wed, 02 Jan 2013 03:44:00 GMT

Congrats again, JDRFers!

As one of the final acts of the 112th Congress, the U.S. House of Representatives and U.S. Senate approved a broad bipartisan bill that included $150 million for the Special Diabetes Program (SDP), extending the program for an additional year. The measure is expected to be signed by the President shortly.

This accomplishment is due to the tremendous leadership of our champions on Capitol Hill and to the incredible efforts of you – the JDRF volunteer who spends countless hours advocating for this critical research funding. With this extension, our nation can continue to make remarkable scientific progress in managing and treating type 1 diabetes while working towards a cure, and improving lives while reducing health care costs to our nation.

Once the new Congress convenes, we will be back in touch to let you know how you can contact your Members of Congress to share your appreciation. But in the meantime, we want to thank you for your great advocacy efforts and wish you a Happy New Year!

Thanks for your support over the last year… we’ll be back at again this year and will continue to need your support, so here’s to another year of great advocacy efforts by you!

Hasan Shah
JDRF Advocacy

Special Diabetes Program (SDP) Funding Approved by U.S. Senate

Hasan Shah — Tue, 01 Jan 2013 12:32:00 GMT

Thanks to you and your advocacy efforts on behalf of JDRF!

I am happy to report that early this morning (around 2:15 am to be more exact!), the U.S. Senate passed legislation which includes a one-year renewal of the Special Diabetes Program (SDP) at the current funding level of $150 million annually.

The SDP funds research through the National Institutes of Health which helps accelerate progress to cure, treat, and prevent type 1 diabetes (T1D). Renewing the SDP was JDRF's top legislative priority this year and it was your advocacy on behalf of everyone affected by T1D which brought us this far. Thank you!

The U.S. House is expected to vote on the legislation shortly. We will keep you posted on developments and will let you know when you can contact your Members of Congress to say thank you.

We greatly appreciate all that you do. Thanks again and be sure to let us know what this means to you by leaving a comment below!

Happy New Year,

Hasan Shah
JDRF Advocacy

JDRF Completes First Stage of the Glucose Responsive Insulin Grand Challenge

Michael — Wed, 19 Dec 2012 18:21:00 GMT

In September, JDRF wrapped up the first stage of its first-ever crowdsourcing challenge to garner ideas for developing a glucose responsive insulin (GRI) drug. The Agnes Varis GRI Grand Challenge Prize, the first stage of which was called the “Theoretical Phase,” resulted in the selection of three winning ideas, presented by five “solvers.” The winning teams each received $35,000 for their ideas, which are being further assessed by JDRF for their potential to work in a laboratory setting.

GRI is an engineered insulin that ideally would remain in a person’s body and regulate blood glucose levels for extended periods, such as a once-a-day treatment or longer (up to a week). Such a breakthrough, when achieved, would effectively end the need for frequent blood sugar checks and multiple daily insulin injections or infusion pumps.

However, the true potential of such a discovery remains unknown. The closest example is a product called SmartInsulin, which is currently being developed by Merck & Co. SmartInsulin was developed by SmartCells, Inc. with support from JDRF. That drug is currently in preclinical development. Because the path to drug approval is long and provides no guarantees in early stages, JDRF decided to pursue other avenues toward this important goal through the Grand Challenge.

In this video, Sanjoy Dutta, Ph.D. discusses in greater detail what GRI is and how JDRF envisions the Grand Challenge bringing such a drug to reality. If you have any questions about GRI, or the Grand Challenge, visit www.jdrf.org.

(Please visit the site to view this video)

Eggnog Etiquette

William Sorensen — Fri, 14 Dec 2012 17:42:00 GMT

During the holidays, you eat and drink with everyone from your second cousin’s hair stylist to the soccer coach for your college roommate’s kid. If you have T1D, as I do, be ready for well-meaning people to ask you some of the same questions you’ve heard since the day you were diagnosed. Here’re eight comments I hear most often, followed by suggestions on how to respond:

Are you going to eat that? People are horrified when they see you eating anything other than a stalk of celery. Respond by saying, “Yes, those of us with T1D can eat anything as long as we deliver ourselves enough insulin to account for how many carbs we’re consuming.” You know the drill. Yes, it’s tedious, but remain calm. You might feel better if you remind yourself you’re helping to enlighten the world about a common health misunderstanding.
Are you sure? A lot of well-intentioned people think they understand your disease better than you do. If necessary, pull medical science into the conversation. “Yes, I’m sure I can eat this. My treatment plan was designed specifically for me, by an endocrinologist. I appreciate your concern.”
Well, I know you can’t eat this so I won’t offer you any. More than a few hosts passing around a plate have said this to me. It’s usually uttered by someone moving fast—someone offering frosted snowman cookies or ladling out cups of rum-laced eggnog—so I don’t usually bother slowing their pace by correcting them. But if it’s impossible for you to let misinformation glide by, you only need five words: “I can. But no thanks.” Or, “Yes, I can. Thank you.”
How can you have diabetes? You’re not shaped like Santa Claus. Suggested answer: “I’ve been asked that before because many people don’t realize there are two types of diabetes.” Then go on to explain what the differences are—if you have the time and patience. Otherwise, tell them to visit the JDRF website.
Did you eat too many candy canes when you were little? This is a variation on the notion that only obese people have diabetes. “You know, I’m glad you asked that question. Quite a few people aren’t aware that type 1 diabetes has no connection with lifestyle, eating habits, or physical activity.” Again, if you’re eager to move on, mention the JDRF website.
Do you really stick needles into yourself? Your impulse might be to say, martyr-like, “People do crazy things to stay alive.” But breathe deeply and slowly explain that it’s part of your daily routine. I like to quote the hospital nurse who taught me how to plunge syringes into myself. “After a week of this, it’ll be as easy as brushing your teeth.”
Does it hurt? I never mind this question. The simple answer is, “No.” Many years ago I realized I didn’t have the option of allowing injections to hurt, so 99 percent of the time they don’t. On the rare occasion when one does hurt, I don’t scowl or wince because my mind is occupied with wondering, what made it hurt? First things first.
You must hate the holidays. Why? Because there are more opportunities to eat? Does that make you hate the holidays?” Your delivery matters with this answer. Don’t sound defensive or angry.

For people living with T1D, that’s a piece of advice to use throughout the year, and throughout life: Don't be defensive or angry. More than likely, anyone with assumptions, questions, or comments about your life with diabetes has your best interests at heart.

Nanoparticle Research Shows Promise for T1D and Other Autoimmune Diseases

Gary Feit — Mon, 03 Dec 2012 19:25:12 GMT

One of the toughest challenges in halting or reversing the autoimmune process that destroys beta cells and causes type 1 diabetes is doing so in a way that does not compromise a person’s entire immune system. Antigen-specific immune therapy research, which targets only a specific part of the immune system, is a key part of JDRF’s strategy to cure T1D. Results from a recent study involving an animal model of multiple sclerosis have confirmed that using nanoparticles may represent an exciting and relatively new approach to antigen-specific immune therapies that could help stop the autoimmune process for people with various autoimmune diseases, including T1D.

The research by Dr. Stephen Miller and his colleagues at Northwestern University involves the use of a nanoparticle-based immune therapy as a treatment for the autoimmune disease multiple sclerosis (MS). In this research, the investigators used biodegradable nanoparticles containing MS-related antigen components to reset the immune system balance and create immune tolerance in an animal model of MS. JDRF provided partial support for this work because of its relevance to T1D immune therapies.

The use of nanoparticles– very small packages as a way to deliver components that trigger the immune system – appears to have the ability to effectively mimic the natural immune system tolerance processes. Such nanoparticles allow the delivery of multiple important triggers of immune tolerance, should minimize side effects by being more specific to T1D, and allow better control of the production of the particles to specifically modify the immune response. While this research has so far only been conducted in mice, if successfully applied to humans, it could provide a potential pathway to controlling the autoimmunity that underlies T1D.

JDRF has been at the forefront of driving research using nanoparticles to benefit people with T1D. In addition to branching out and funding Dr. Miller’s study on MS because of its relevance to T1D, JDRF has a robust portfolio of other promising research it is funding in this area. JDRF’s recent and current funding commitments to research involving nanoparticles total over $6 million.

Included in this research are other studies by Dr. Miller that specifically focus on T1D. In this research, Dr. Miller is attempting to use nanoparticles to help achieve immune tolerance for transplanted insulin-producing islet cells. Another JDRF-funded study in this area that has received attention is one conducted by Dr. Pere Santamaria at the University of Calgary, using nanoparticles to restore the balance among the T cells and stop the autoimmune process in T1D. His work involves assembling triggers of the immune system onto a nanoparticle, including specific T1D antigens. It has shown that protective T cells still exist in T1D, but just not enough of them to properly control the autoimmune process. By dosing mice with his nanoparticles, Dr. Santamaria has been able to increase the numbers of the protective T cells resulting in a rebalancing of the T cells and halting the autoimmune process.

In addition to the research led by Dr. Miller and Dr. Santamaria, JDRF’s nanoparticle portfolio includes an industry partnership with Selecta Biosciences as well as studies being conducted by Dr. Eric Bachelder at Ohio State University, Dr. Nick Giannoukakis at the University of Pittsburgh, Dr. Teresa DiLorenzo at Albert Einstein College of Medicine, Dr. Francisco Quintana at Brigham and Women’s Hospital, and others.

Email Congress to Renew Critical T1D Funding

Hasan Shah — Thu, 29 Nov 2012 19:13:00 GMT

Help me tell Congress, “Renew the Special Diabetes Program (SDP)” by sending a quick email (…and thanks again to those of you that made calls earlier this month, use this email alert to follow up)!

As you know, the SDP is a critical federal program that is helping to advance research to cure, treat and prevent type 1 diabetes and its complications. Congress needs to renew the SDP before they adjourn for the year in order to prevent SDP-funded research from slowing down or halting completely.

Please take action now and personally urge your Representative and Senators to support the timely, multi-year renewal of the SDP!

Share this call-to-action with your family and friends and help us spread the word! You can use the text below to share with your networks on Facebook and Twitter:

Facebook: Help me tell Congress, “Renew the Special Diabetes Program (SDP)” by sending a quick email at www.jdrf.org/ACTION! The SDP is a critical federal program that is helping to advance research to cure, treat and prevent type 1 diabetes and its complications—and I need your help to make sure it continues!
Twitter: Tell Congress #RenewSDP at www.jdrf.org/ACTION! Help advance research to cure, treat & prevent #T1D and its complications! #diabetes #DSMA

Hasan Shah
JDRF Advocacy

Giving Thanks - Family, Friends and the SDP

Camille Nash — Wed, 21 Nov 2012 14:12:00 GMT

Good morning. As I have spent the last days preparing for the visit of my family for the Thanksgiving holiday, I have been thinking about what I am grateful for. As the National Chair of JDRF Advocacy and the parent of a daughter with type 1 diabetes, I am often reminded of what our JDRF community has accomplished, and also of how much more there is to do.

I have communicated with many of you here on the “Type One Nation” Advocacy blog throughout the fall about why securing a multi-year renewal of the Special Diabetes Program (SDP) before Congress adjourns for the year is imperative. The SDP provides $150 million a year through the federal government for critical T1D research at the National Institutes of Health (NIH).

What am I grateful for? I am grateful for my daughter and for all of my family. I am also grateful for my “other family” – that is, my JDRF family, and the work we do together at JDRF Advocacy. I am thankful for SDP funding to cure, treat and prevent diabetes. I know that the improved therapies we have today are a result of the SDP and that a better, healthier future for my daughter and for all people with diabetes requires that we continue our efforts, and that we Don’t Stop Now – RENEW THE SDP.

Please leave me a comment below, and tell me why YOU are thankful for SDP research. Then, retweet this on Twitter, share this on Facebook, and please let as many of your friends and family as possible see the above image on your social networks.

Enjoy the holiday, the company of loved ones, and then rest up. We’re going to need to put all our energy into advocacy efforts when Congress returns to Washington next week.

Today and every day, thank you for all you do.

Camille Nash
JDRF Advocacy
National Volunteer Chair

Congratulations on the Final AP Guidance

chutton — Fri, 16 Nov 2012 18:24:00 GMT

After all of the work many of you put into making the artificial pancreas guidance from FDA a reality, I wanted to say thank you and congratulations! FDA released the final guidance and included nearly all of JDRF’s suggested changes – see the statement we made. This truly is a milestone in artificial pancreas development that will help to get these much needed systems to people with type 1 diabetes.

We have more to do. Artificial pancreas systems are now being tested in outpatient trials, thanks to funding from JDRF and the National Institutes of Health's Special Diabetes Program (SDP). We need your help to ensure Congress passes a multi-year renewal of the Special Diabetes Program before the end of the year so this funding can continue. Contact your members of Congress and tell them to renew the SDP to advance the artificial pancreas!

And thank you for all you do.

Implanted Encapsulated Pancreatic Islet Product Safely Demonstrates Improvement of T1D Management

Tara Wilcox-Ghanoonparvar — Fri, 16 Nov 2012 18:04:00 GMT

In September, Living Cell Technologies (LCT) revealed positive results from its JDRF-funded Phase II study of DIABECELL—a unique proprietary encapsulation technology comprised of encapsulated pancreatic islets from pigs. According to LCT’s announcement, the New Zealand-based study in 14 study participants with type 1 diabetes (T1D) demonstrated the product’s safety and ability to reduce hypoglycemia, lower HbA1c levels, and improve quality of life over a 52-week period following implantation of the product. While none of the participants in the DIABECELL trial became insulin independent, this first-generation encapsulation product is the most advanced demonstration of the potential benefit of an encapsulation product in T1D.

The objective of this research was to test the safety of the implantation of DIABECELL, and whether the implanted pig islets improve blood glucose control in people with T1D. The findings demonstrate the potential of such novel techniques to improve the management of T1D in the short term.

Led by Dr. John Baker at Middlemore Hospital in Auckland, LCT’s study used islets from specially bred pigs, and encapsulated them before implantation in the hopes of protecting them from any harmful immune response—thereby eliminating the need for immunosuppressant drugs. The protected islets were implanted into the abdomens of study participants through a laparoscopic procedure.

Encapsulation is one of JDRF’s priority areas of research toward curing T1D. Its promise lies in its potential to address two main hurdles to widespread beta cell transplantation as a cure for T1D: the limited supply of transplantable cells available, and the need for life-long immunosuppression therapy to prevent the rejection of those transplanted cells. Over the past five years, JDRF has provided more than $26 million toward research into encapsulation and xenotransplantation (transplanting insulin-producing islets from animals into humans) through direct funding and collaborations with other organizations—including $4.6 million in FY2011—to address these obstacles.

In addition to LCT’s research, JDRF is funding significant projects that are also developing alternative beta cell and islet encapsulation product concepts. One example is a collaboration with the biotechnology company ViaCyte to develop a first-of-its-kind encapsulated stem cell-based replacement therapy. At Emory University, JDRF-funded researchers are exploring ways to improve alginate microcapsules for pig islet transplantation. A grant to Harvard University—partially funded by The Leona M. & Harry B. Helmsley Charitable Trust (HCT)—has made possible another prominent study at the Massachusetts Institute of Technology, researching biomaterials and delivery systems for islet encapsulation. Furthermore, in August, JDRF announced a major collaboration with the HCT to fund advanced encapsulation research at the Diabetes Research Institute at the University of Miami.

It is too soon to know when DIABECELL might be commercially available; trials in Argentina are also taking place, and Phase III trials are needed to test the product on a larger number of participants, identify any adverse reactions, and explore long-term benefits of use. Still, LCT’s innovative product concept in the field of beta cell replacement could lead to exciting advancements in T1D research.

World Diabetes Day Action - Call Congress

Hasan Shah — Wed, 14 Nov 2012 20:46:00 GMT

It’s a critical time for type 1 diabetes (T1D) research, and we need you to call your members of Congress today (or tomorrow, 11/15) and tell them “don’t stop now, renew the SDP!” The Special Diabetes Program (SDP) provides $150 million a year for T1D research through the National Institutes of Health. It is advancing important new technologies and treatments and bringing us closer to a cure – and it will end if Congress doesn’t act to renew it.

Calling is easy, just follow these steps:

GO to the JDRF Advocacy Call site to read the summary for this call-to-action and then enter your email address where you received this message.
Read the talking points and then enter the phone number at which you would like to be called.
Pick up the phone when it rings… it’s the JDRF Advocacy site calling!
After a quick intro, you’ll be connected to the office of the members of Congress listed to the left of the screen automatically.
Press * to get ready for the next call and fill out a short, two question, survey.

Please DO NOT hang-up until you are on the Thank You page.

By taking action, you can help continue progress towards technologies like the artificial pancreas, therapies to prevent kidney disease, and research to better understand the causes of T1D so we can cure and prevent it. Completing all your calls will ensure that all of Congress is hearing from T1D advocates. And providing your feedback through the survey will allow us to determine if we need to do any additional follow up with a congressional office.

You can learn more about the SDP on the new Advocacy site and be sure to share all the great things you learn by ‘liking’ the site!

Hasasn Shah
JDRF Advocacy

T1D and Veteran's Day

Camille Nash — Sat, 10 Nov 2012 00:32:00 GMT

November is National Diabetes Month. We also celebrate Veterans’ Day and honor those who have served or are serving in the United States military.

Captain Joseph Budzyn of Mokena, Illinois, an Eagle Scout and a 2008 graduate of the Air Force Academy recently shared his story with me. Nominated to the Air Force Academy in Colorado Springs by his congressman, he joined this prestigious class of 1300 young men and women to fulfill his dream of serving his country and learning to fly. He was commissioned as a 2^nd lieutenant and was a C-130H copiliot at the time of his diagnosis. Currently a captain, Budzyn recently wrote me about his type 1 diagnosis and what striving for a cure for type 1 and better therapies and treatments until that time, means to him.

“ I was diagnosed with T1D two years ago on 23 Sept 2010. At the time, I was in training as a C-130H pilot for the US Air Force. When I started having the symptoms and researched them online, it always came back that I probably had T1D. If I was diagnosed, I knew it would mean the end of my flying career so I delayed the inevitable as long as possible.

Over the last two years I have been able to remain on active duty as an officer in the Air Force. While I have not been able to continue flying for the Air Force, I am in the process of retraining and transitioning to a new career field.

So what motivates me? The possibility of a future where children whose dream it is to fly or serve in the military do not have to give up on that dream because of T1D. I am motivated to help find a cure or further advocate for improvement in medical devices to control and reduce the burden of having T1D. Thank you for your time and I truly look forward to working with JDRF!”

Captain Budzyn’s dream for the future is not different from the hopes and dreams most parents have for their children: to live a rich and productive life and for them to follow their dreams; that they discover a passion that gives their life meaning and makes the world a better place.

As Captain Budzyn and anyone else living with type 1 will attest, being diagnosed profoundly changes your life, creating new challenges, changing the way you live day-to-day, altering the route taken to achieve your goals, sometimes changing the goals themselves.

Living with diabetes requires enormous amounts of energy, tenacity and resilience. Following one’s dreams requires the courage to persevere and navigate obstacles, forging new paths, and at times creating new goals, new dreams.

On Veterans’ Day, we thank Captain Budzyn and all service members for their sacrifices and dedicated service to our country and its’ principals.

In November, National Diabetes Month, we also honor all those who live with diabetes. We are thankful for the scientists, doctors, diabetes advocates and all those who have played a role in this progress that has resulted in better, safer and easier management of type 1. And we continue to advocate for diabetes research funding, knowing life can and should be so much better for people with type 1. From the strength of our numbers as JDRF Advocates to the passion in our hearts, we will strive for better treatments and technology as we continue moving closer to a cure.

To find out what you can do to help support type 1 diabetes research, visit our JDRF Advocacy site or leave me a comment below!

Camille
JDRF Advocacy

The Time to Renew the SDP is NOW!

Amanda McKinney — Wed, 07 Nov 2012 20:37:00 GMT

For the past few months, we’ve been stressing the importance of the Special Diabetes Program (SDP), which has in one way or another changed the lives of every person living with diabetes today. Since Congress and the Administration created the program in 1997, the SDP has led to groundbreaking discoveries and new treatments. However, the diabetes community could face a sudden halt to this progress, without a multi-year renewal of the SDP before Congress adjourns for the year. That would result in a 35% reduction in federal diabetes research funding. Between now and the end of the year, we will be equipping you with key facts about why you must urge Congress to support the SDP – and calling upon you to take action when your Representative and Senators need to hear from you!

So, what can you do? Check out JDRF Advocacy on the social networks you are on. We will be posting SDP information on our Facebook, Twitter and Pinterest pages every day between now and the end of the Congressional session. ‘Like’ the content that touches you and share it with your friends! It doesn’t matter if you have 52 followers or 1,000 friends, share it and help us spread the world. We have a lot of exciting things we cannot wait to unveil. A new website, infographics and a call to action are all in the works!

Gary Hall Jr. ten time Olympic Medalist has already started spreading the word, urging Congress to renew the SDP. Feel free to leave your reasons below. The SDP provides critical funding that will continue to change the lives of people with T1D and with your help, we will continue to learn from SDP funded research! Together, we will get the SDP renewed!

Don't Stop Now, Renew the SDP!

Amanda
T1D Advocate

WSJ Op-Ed by Woody Johnson Discusses Importance of Diabetes Research

Melissa — Thu, 25 Oct 2012 22:35:00 GMT

In today's Wall Street Journal, you'll find an Op-Ed entitled "The Folly of Defunding Diabetes Research," authored by JDRF International Chairman and owner of the NFL's New York Jets, Robert Wood "Woody" Johnson, IV. If you missed this personal and powerful piece about T1D and renewing the SDP (Special Diabetes Program), you can read it by clicking here. As a well-known public figure, we're lucky that Mr. Johnson shared his personal story to help educate others about T1D, the research resulting from the Special Diabetes Program, and why we must renew it.

Here's a highlight from the piece:

"For the past 16 years, the Special Diabetes Program has been the foundation of the federal government's effort to combat diabetes. As a businessman, I know when I see a program that works, and the $150 million in annual funding provided by SDP has led to significant discoveries into what causes Type 1 diabetes and how to better treat the disease. Researchers can now imagine what has seemed impossible -- a cure."

You too, can help educate others about T1D and the Special Diabetes Program. As an Advocate for JDRF, we'll notify you of important diabetes related issues (like renewing the SDP!) and let you know how you can help. The more Advocates we have speaking up about the importance of research and the Special Diabetes Program, the better!

As Mr. Johnson says, "We have the opportunity to spare untold millions of Americans the trauma of this disease. Congress must make this long-term commitment to combating -- and potentially defeating -- diabetes. Even at a time of national economic difficulty, the choice seems obvious. The Special Diabetes Program works. Congress must ensure it continues."

Join us as we work together to make sure Congress renews the Special Diabetes Program. We can't do it without you! Please let us know in the comments section below why you'll be joining us in this effort.

Don't Stop Now. Renew the SDP.

Tips to Children's Congress

Hasan Shah — Mon, 22 Oct 2012 13:59:00 GMT

We’re less than 2 weeks out from the last day to apply to the JDRF Children's Congress 2013 - Thursday, November 1 or T1D Day! If you know someone age 4 to 17 with T1D (type 1 diabetes) and has never been a CC Delegate, I hope you’ll encourage him or her to submit an application this week!

This will be my fourth time as part of the team that supports Children's Congress (CC) so I thought I share a few tips about the application that might be handy to potential applicants that have applied in the past or are applying for the first time:

DON'T GIVE UP! The volunteer selection committee looks favorably upon applicants that have applied multiple times… to them, it shows that being a CC delegate isn’t just about getting selected to you, but about representing the T1D community!
Be candid about how T1D impacts your life and how you beat it every day to persevere in everything you do!
Take the time to learn about the Special Diabetes Program – not only does it help all of us be better advocates for T1D research but as an applicant, it’ll make your submission more compelling and relevant to CC.

Remember, if you or someone you know is age 4 to 17 with T1D and has never been a CC Delegate, then be sure to apply to Children's Congress 2013 by November 1, 2012. If selected, JDRF covers the cost of the delegate(s) and one parent/guardian.

Hasan Shah
JDRF Advocacy
CC13 Support Staff

Role Models in Diabetes

Hasan Shah — Sat, 13 Oct 2012 01:32:00 GMT

The Children’s Congress 2013 (CC13) applications are due on November 1, 2012, the event will be held in Washington, D.C. from July 8-10, 2013 so don't miss your chance to participate! I also wanted to share another quick note from Angie Platt, Chair of CC13, on the Role Models in Diabetes town hall held during CC11:

The Role Models in Diabetes town hall session was so inspirational! To hear first how these role models not only live with but excel with type 1 diabetes was priceless: Carling Coffing, Dr. Nat Strand, Gary Hall, Kendall Simmons and Dr. Aaron Kowalski. The highlight of the town hall was to have the honor of listening to U.S. Supreme Court Justice Sonya Sotomayor. To hear her description of being diagnosed and how living with the disease actually made her more responsible and determined was so inspiring. Watch the comments some of the role models made before and after the town hall below:

During the town hall session:

(Please visit the site to view this video)

Carling Coffing, LPGA:

(Please visit the site to view this video)

Kendall Simmons, retired NFL player:

(Please visit the site to view this video)

Gary Hall, Olympian swimmer:

(Please visit the site to view this video)

Justice Sonya Sotomayor, U.S. Supreme Court, with Children’s Congress 2011 Delegates:

Hope you enjoyed some of what CC13 delegates have a chance to experience, so if you're between 4-17, be sure to apply by Thursday, November 1, 2012!

Angie Platt
Chair, Children's Congress 2013
JDRF Government Relations Committee

Be sure to leave a comment or a question for Angie, I'll make sure we pass it on to her!

Hasan Shah
JDRF Advocacy
CC13 Support Staff

JDRF Discusses New Treatment for Diabetic Eye Disease

Liz Cuebas — Fri, 12 Oct 2012 01:07:48 GMT

Eye disease is one of the most common complications of type 1 diabetes.

Eye disease in people with diabetes, also known as diabetic retinopathy, is caused by chronic high blood sugar levels, which can damage the blood vessels in the retina of the eye and cause excess blood vessel growth. Retinopathy can range from extremely mild to vision-threatening. One of the most common complications of retinopathy is diabetic macular edema, which results when fluid and protein build up on the retina and cause swelling and fluid leakage. Diabetic retinopathy, including diabetic macular edema, is the leading cause of adult-onset blindness.

Developing effective treatments for diabetic retinopathy is a key part of JDRF’s research goals. Until recently, the only treatment for diabetic macular edema was with lasers that often halted the worsening of the condition but did not improve a person’s eyesight. Now, however, a promising new treatment has emerged in the form of a drug called Lucentis (known generically as ranibizumab).

Lucentis, which is already approved for treatment of other eye disorders, has the potential to actually restore eyesight in people suffering from certain diabetic-related vision loss. It works by suppressing the growth of new blood vessels that cause swelling and leakage in the retina. Lucentis is administered through injections to the eye. In August, the FDA announced that it would approve Lucentis for use in treating diabetic macular edema.

In the video below, JDRF’s Dr. Helen Nickerson discusses this promising development and JDRF’s key role in funding the basic research that ultimately led to the discovery and development of Lucentis preceding its approval by the FDA.

(Please visit the site to view this video)

To learn more about JDRF’s research strategy and understand how JDRF’s programs are making progress toward our goal of curing, better treating, and preventing T1D, please visit JDRF’s website; subscribe to our online publication Countdown; and visit our newsroom, all of which are updated with new stories frequently.

For other recent updates on diabetic retinopathy research, please see the following recent Key Advances on the JDRF website:

Novel Pathway May Lead to Proliferative Diabetic Retinopathy Treatment

Early Detection of Diabetic Retinopathy

Novel Pathway Reduces Diabetic Eye Disease in an Animal Model

Novel Tests Detect Early Changes in the Retina in Some Adolescents with Diabetes