HAPPY NEW YEAR 2013!!

At the close of last year, we asked the top diabetes advocacy organizations and communities to share what they felt they'd accomplished in 2011, and what kinds of plans / goals / strategies they had in mind for 2012?

It only makes sense that we return to them this year with the same question: did they meet their own expectations for 2012? And what do they envision for continuing to help the D-community in 2013?

Below are the answers we received from their various leaders and spokespeople (presented in alphabetical order).

Another great year down, and headed exciting places for the next? Again, you be the judge...

News nuggets from around the diabetes community

Endocrine Society Annual Meeting Happening Now
Follow #ENDO2015 for updates on research & treatments.
FDA Approves New Basal Insulin
Sanofi's Troujeo has 'flatter profile' of action that helps to avoid lows.
Daytona Win for Racecar Driver with Diabetes!
Type 1 driver Ryan Reed wins first NASCAR series race at Daytona on Feb. 21.

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American Association of Diabetes Educators (AADE)

 

2012: We made a great deal of progress this year, particularly on the prevention front. AADE was one of six organizations chosen by the Centers for Disease Control and Prevention to help expand its National Diabetes Prevention Program, an evidence-based lifestyle change program designed to prevent type 2 diabetes. With this grant, we will be on the front lines of helping the millions of Americans who have pre-diabetes. More specifically, we will provide funding opportunities and resources to diabetes education programs that are interested in delivering these prevention services in their local communities.  AADE will also work with businesses and insurers on efforts to develop financial support for these classes and make diabetes prevention programming a reimbursable health benefit.

Advocacy initiatives also took front and center, as our state licensure initiative continued to gain traction in number of states, including Pennsylvania, Florida, Georgia, Indiana and Washington. Licensure of diabetes educators at the state level offers consumer protection for the patient, professional recognition of the diabetes educator and sets quality guidelines for the profession. We also continued to expand our efforts to educate the diabetes community on advocacy issues at the federal and state levels.

2013: This year marks the beginning of AADE's new three-year strategic plan. Our overarching goals for this period are to Invest in Diabetes Educators, Advance Diabetes Population Health, Expand AADE's Capacity and Empower People with Diabetes. More specifically to the latter, we will focus on expanding our array of evidence-based tools and resources, and will launch a multi-faceted awareness campaign to raise the profile of diabetes educators and the importance of diabetes self-management education.

 

American Diabetes Association (ADA)

 

2012: This year was one of milestone years, as we kicked off our 2012-2015 Strategic Plan. Our work to Stop Diabetes® is achieved by thousands of volunteers, staff and corporate supporters nationwide. Highlights included:

Research: The Association made $34.6M available to support 450 ongoing research projects across the broad spectrum of diabetes to improve the lives of people affected by this disease. We saw tremendous progress from these, which included advances in understanding the emerging role of fat tissue inflammation in the development of diabetes, techniques for non-invasive imaging to visualize functional beta cell mass, and "re-educating" the immune system with cord blood stem cells to prevent and/or reverse type 1 diabetes—to name just a few.

Advocacy: Alaska, Georgia, Louisiana and the District of Columbia passed laws and/or adopted policies meeting all three major tenets of our Safe at School campaign, and Connecticut strengthened its laws to cover two of three major tenets.

American Diabetes Association Alert Day: Held March 27, this is our annual call to action for Americans to learn their risk for developing type 2. We made our Diabetes Risk Test available in English and Spanish, in print, online and on Facebook. More than 567,000 people have taken the test since Alert Day, and those identified as high-risk were encouraged to see their physician—getting us one step closer to stopping diabetes.

American Diabetes Month: This November's theme was "A Day in the Life of Diabetes." The campaign's centerpiece was a Facebook mosaic encouraging the public to upload a photo or image representing what the theme means to them and heightening awareness of the disease. The mosaic was projected in a larger-than-life display at Union Station in Washington, D.C., to coincide with World Diabetes Day. The Association worked with Pulitzer Prize-winning photographer Jay Dickman to create a visual narrative, also displayed at Union Station.

2013: We will build on the successes of 2012, and would like to mention two new programs in particular:

Pathway to Stop Diabetes: In December 2012, the American Diabetes Association announced a bold research initiative to inspire and support a new generation of diabetes researchers. Individuals supported through this program will focus on innovative ideas and transformational approaches that lead to discoveries in diabetes prevention and treatment, and ultimately change the face of diabetes. Our goal is to fund more than 100 scientists in the next decade, and the first Pathway Award applications will open in Q2 2013.

American Diabetes Association Academy: Is your diabetes care provider up-to-date on the latest Standards of Care, position statements and other Association recommendations? This program will offer new CME (continuing medical education) presentations, given by expert speakers, at medical schools and other institutions to help train health care professionals in the latest diabetes care. The information will be objective and validated and offered at no cost to the schools. The first modules available will cover hypoglycemia, treatment of type 2 diabetes and diabetes in the elderly.

 

Diabetes Advocates

 

2012: The Diabetes Advocates program diversified and added even more new advocates than previous years.  Membership grew from 64 members in 2011 to 85 in 2012.  This year also included a major overhaul of the communication system that happens between advocates.  The group was able to have a presence at multiple TCOYD conferences and AADE largely thanks to the sponsorship of Sanofi.

2013: We plan on building upon the success of 2012 by implementing a call-to-action mailing list, an idea that was born from the response of the open letter to NPR (protesting their treatment of diabetes and social media in a story).  We will also be providing more tools and resources for members to become more familiar with the FDA and ultimately benefit more people touched by diabetes.

Diabetic Connect

2012: Our partnership with Joslin Diabetes Center has been one of the highlights of 2012. The three clinicians from Joslin have spent time thoughtfully answering hundreds of questions from members of Diabetic Connect. The resulting answers are creating a fantastic growing resource of information and insights for people seeking help in managing their diabetes. We were also pleased to be selected by Consumer Reports as a distribution partner for their "Choosing Wisely" campaign, a series of evidence-based lists of frequently overprescribed tests and procedures. We believe this campaign aligns with our mission of empowering patients, giving them the knowledge and information they need to actively participate in their healthcare. We also launched our first foray into patient data tracking of A1c and glucose levels with input interfaces on our website as well as through our iOS and Android mobile apps (which also launched this year).

One of the highlights of our year, came from our experience in providing scholarships for 35 e-patients to attend and participate in the Stanford Medicine X conference. We were so pleased to help give patients a voice at a conference focused on exploring the future of medicine and emerging healthcare technologies. We hope to continue to facilitate the patient voice wherever it needs to be heard.

We've also spent a tremendous amount of our time this year listening to the users of our site and others with diabetes. We're working hard on continually improving our online community, focusing on providing support around the major issues that make diabetes so difficult to manage on a daily basis. We're very excited about what we've learned and what we're working on.

2013: In 2013, we look forward to launching a significant redesign of Diabetic Connect. Thanks to our acquisition of the medical research platform Medify, we're adding new technology that will make the entire experience more personalized and will more easily surface content and conversations that are relevant to each user. We continue to pursue partnerships with trusted sources of health information and hope to bring even more experts into our community to educate and empower patients this year.

  

Diabetes Daily

2012: As a community grows from 10,000 to 100,000 members, it requires constant, thoughtful cultivation of a positive culture. This was a year of stepping back and focusing on deepening the quality of interactions that happen on Diabetes Daily, creating high-quality educational content, and more thoroughly understanding the needs of our diverse community. All of these improvements would not have been possible without the edition of Ginger Vieira, author, blogger and health coach, to our team. Thanks, Ginger! The community is growing and healthier than ever as we move into 2013.

2013: We are very excited about some upcoming partnership announcements as we use our community management skills to help other organizations serve people with diabetes more effectively. This is the big behind-the-scenes story for 2012, but for now it's all top secret. Stay tuned!

  

 

Diabetes Hands Foundation (DHF)

2012: We had a wonderful year of expansion and growth. We hired two full-time employees and one part-time employee thanks to a grant from the Helmsley Charitable Trust.

The Big Blue Test was a huge success for the fourth year in a row.  We raised the bar and challenged the community to enter 20,000 Big Blue Tests (compared to 8,000 last year).  We awarded $100,000 in Big Blue Test grants to seven non-profit organizations: Auxanomen Health Clinic, American Youth Understanding Diabetes Abroad (AYUDA), DASH (Diabetes and Sports Health) Camps, Insulin for Life USA, University of Colorado, Skaggs School of Pharmacy and Pharmaceutical Sciences, Fundación Aprendiendo a Vivir and Fondation Haitienne de Diabete et de Maladies Cardio-Vasculaires.

TuDiabetes.org hit the 25,000 member milestone and both TuDiabetes and EsTuDiabetes celebrated their fifth birthday.

2013: We plan to continue developing the two social networks and listening to our community members about how they would like us to foster engagement and growth.  The Big Blue Test will continue to help people recognize the value of physical activity in diabetes management and give people the opportunity to help others while helping themselves.

  

Diabetes Research Institute (DRI)

2012: DRI researchers have made significant progress in our efforts to restore natural insulin production without the long-term need for anti-rejection drugs. Among these advances are the use of natural occurring Myeloid Derived Suppressor Cells (MDSC) and Regulatory T-cells (T-regs). MDSC's are immune cells found in large numbers surrounding tumors. The cells play an active role in suppressing the immune attack and destruction of the tumor. Now, we are harnessing that same mechanism to prevent the immune attack on transplanted cells. We have also initiated a study using a transplant patient's own T-regs in an effort to restore immunologic 'tolerance" or "acceptance" to the transplant.

In addition, the multi-center Clinical Islet Transplant Consortium (CIT) completed the enrollment and transplantation of the 48 patients in the Phase III trial. Data from this islet alone protocol will be compiled and the report presented to the FDA. This is the next step in obtaining biological licensing criteria and approval for islet transplantation as a treatment for diabetes.

2013: Building upon several strategies to improve the biological replacement of insulin producing cells, our scientists continue to work on the creation of a "mini-organ", providing a dedicated environment for islets. This bioengineered mini-organ will provide physical support and nutrients similar to the native pancreas and vital for long-term islet function. Together with DRI Federation partners from Tbilisi, Georgia and Edmonton, Canada we will further develop an alternative cell transplant site by engineering a vein (venous sac) in the abdomen to house the islets and other critical factors to sustain islet function.

We will also initiate a new clinical trial in conjunction with researchers at University of Louisville and Hackensack University Medical Center involving the use of donor bone marrow as a way to reset the immune system and establish immune tolerance to transplanted tissue.

  

International Diabetes Federation (IDF)

2012: This year diabetes has been put on the global health radar. The UN Non-Communicable Diseases (NCD) Summit in 2011 was the start of an important process for people with diabetes and those at risk, which culminated at the end of 2012 when WHO member states agreed to a range of NCD targets.

Throughout the WHO-led process, IDF and its partners in the NCD Alliance have campaigned against skepticism and reluctance for a meaningful number of targets, and to secure targets that balance prevention, treatment and care.

These targets will drive change for the millions of people currently without access to life-saving diabetes medicines and technologies.  Now national governments are starting to put frameworks and targets in place, we can begin to hope that change is possible.

2013: The vision for IDF in 2013 and over the coming years is to continue to be the authentic voice of people with diabetes. We want to see a stronger regional and national presence. In 2012, we have been very successful in influencing global health policy makers, and now we want to see these translated on the local, national and regional levels.

To help achieve this, IDF will empower local leadership (i.e. national diabetes associations) to be even more effective and campaign for improved quality of services for people with diabetes in their own country.

JDRF

2012: JDRF is the only global organization with a strategic plan to bring a continuous flow of life-changing therapies and, ultimately, a cure for Type 1 Diabetes (T1D). As such, we made significant strides in 2012, including the following highlights:

* JDRF helped lobby FDA to issue final guidance on artificial pancreas technology, providing a clear path toward improving lives by moving the transformative technology into the hands of millions of people with T1D. Issued this November, the final FDA guidance, for the first time, provides researchers and industry with a clear and reasonable roadmap of the agency's expectations for conducting human studies of artificial pancreas systems, and for their approval for marketing to people with diabetes. JDRF first proposed draft guidance in March 2011, after convening an expert panel of clinician researchers to assess the best ways to measure safety and effectiveness of artificial pancreas systems. JDRF then led an extensive scientific and patient advocacy campaign to encourage the FDA to adopt its recommendations. JDRF provided extensive comments on the FDA's first draft guidance, and the final guidance incorporates nearly all of the recommendations made by JDRF and the clinical community.

* The FDA approved the use of ranibizumab injection to treat diabetic macular edema (DME), the first new therapy for this condition in 25 years and a potential new standard of care. This drug blocks a protein called VEGF, or vascular endothelial growth factor. JDRF funded multiple basic research grants which helped establish the key role for VEGF in diabetic eye disease and has been involved in supporting numerous clinical studies that helped demonstrate the benefit of anti-VEGF therapy in treating DME.

* Substantial progress was made on numerous fronts to discover and develop therapies that regenerate a person's lost insulin-producing beta cells. In one example, JDRF supported researcher Dr. Didier Stainier who's developed a novel and fast screening strategy to accelerate the process of finding an "active" drug candidate that stimulates beta cell regeneration. Dr. Stainier screened 7,000 compounds before determining that a compound called NECA could increase the proliferation of mouse beta cells, which translated into improved glycemic control in diabetic mice. This early stage work identified a new pathway that could be translated into a drug development effort to promote beta cell regeneration in people with T1D.

* Enterovirus infections have been linked to T1D in several studies. A JDRF-funded study evaluated whether the lining of the intestinal tract is a reservoir for the persistence of enteroviruses in people with T1D. These results suggest that a large proportion of T1D patients have a persistent enterovirus infection associated with an inflammation process in the lining of their intestine. This persistent infection may produce a continuous inflammatory state that can spread to the pancreas and play a role in triggering the T1D disease process. Ultimately, if enteroviruses are proven to play a critical role in T1D, development of a vaccine or anti-viral agents that target the virus may be a possible T1D prevention strategy.

2013: JDRF will continue to invest in the most promising research to cure, treat and prevent T1D. "Less Until None" is our promise to progressively remove the impact of T1D from the lives of those affected until it is no longer a threat to them or their families. Please visit our JDRF Research page for more information.

  

Taking Control of Your Diabetes (TCOYD)

2012: TCOYD has a record year in terms of attendance, with over ~1500 per conference and ~2500 for our flagship program in San Diego. We also had packed CME (continuing medical education) programs that are run in parallel with the patient program ~220 per conference. The Fourth Edition of the TCOYD book was released with over 540 pages written by Steve Edelman and friends such as AmyT! At our 18th annual TCOYD conference in San Diego, we had our first Type 1 Track, which was a tremendous success! We had over 500 folks with type 1 diabetes attend.

2013: We learned that people with type 1 diabetes really have special needs in terms of education and will have a Type 1 Track at all of our conferences going forward. Topics include CGM, pumps, autoimmune conditions (celiac/hypothyroid), other therapies (GLP-1, Symlin, metformin etc.), family planning, dealing with exercise, cure-based therapies, artificial pancreas, etc.  We will still have an excellent Type 2 Track that also has more focus on pertinent type 2 topics. Our other big initiative is a collaborative registry called WeR1, for diabetes professionals with type 1. With so many folks with type 1 working in the field, WeR1 will be instrumental in connecting them and letting patients and industry have ready access to these professionals living with type 1 for patient care, advisory boards, speaking, consulting, etc.

    

We love the shift to real, tangible action items we see this year.  Thanks to each of these orgs for the work they do, and for communicating their milestones and goals with us here. Here's to a(nother) productive and collaborative new year!

 

{Editor's Note: DSMA (Diabetes Social Media Advocacy) and CWD (Children with Diabetes) were queried for this post, too, but weren't able to make the deadline. We hope to catch up with them soon.}

 
Disclaimer: Content created by the Diabetes Mine team. For more details click here.

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.