I am a fan of stories. So please indulge me as I share with you a very special one…
Once upon a time, there was a King.His name was Reed, and as principal he ruled a High School up in Massachusetts.
About ten years ago, Reed knew there was something "wrong" with him.It didn’t take long for his doctor to tell him that he had type 2 diabetes.He was told he had an A1c of 9.5. He really didn’t know what this meant. He started on insulin, he was feeling hopeless and in denial…
And then, one day… he Googled his way to the TuDiabetes social network.
After joining TuDiabetes, he connected with many that made him feel understood, and listened to. Today, he is part of theTuDiabetes Care Team:He welcomes you when you join,He wishes you happy birthday.And this amazing guy is 85 years old!!!
He has been able to bring his A1c down to 5.9through what he has learned on TuDiabetes (and shared with his doctor)Ever since he joined TuDiabetes, his blood sugars rarely steer far from 120 mg/dL. Not only is he sharper mentally thanks to his engagement in the community.Reed saysTuDiabetes saved his life!
Reed’s story is no coincidence. There’s a reason for it.While this may seem like the WDD symbol, it actually is an attempt at representing the number of hours in a year that we as people with diabetes spend with a medical professional: about 0.1% of our lives in the course of a whole year.This IS very much a condition that we have to manage on our own… so peer support like the one Reed received can make a huge difference.
Today there’s also increasing scientific evidence behind the impact that loneliness has on people’s lives, the same loneliness that Reed felt before he connected with others on TuDiabetes:“Psychobiologists… have proved that long-lasting loneliness not only makes you sick; it can kill you. Emotional isolation is ranked as high a risk factor for mortality as smoking. A partial list of the physical diseases thought to be caused or exacerbated by loneliness would include Alzheimer’s, obesity, diabetes, high blood pressure, heart disease, neurodegenerative diseases, and even cancer—tumors can metastasize faster in lonely people.”Thanks to Peter Nerothin for pointing me in the direction of this fascinating article on New Republic, from May 2013:http://www.newrepublic.com/article/113176/science-loneliness-how-isolation-can-kill-youTaking all this into account, you can imagine how we felt when we learned from a survey we conducted that as a result of joiningTuDiabetes, 60% members feel a larger sense of connection with others touched by diabetes.
Before going on about the rest of our programs, I want to LINK with Emily Coles (who is not with us today), so she can give you an update about the state of our online communities.PLAYExciting, don’t you think? In particular, to think of the fact that this has happened in the span of just over 6 years!
Now I would like you to join me on a quick exploration that I have been on in the past few months.Every November 14, as we gear up for World Diabetes Day, I get nervous… we try to get creative about ways to raise awareness and make noise to bring more attention towards diabetes.We light up buildings blue, we pin celebrities with the blue circle, we dress in blue (in fact we do that many Fridays throughout the year –nod to Cherise Shockley).But when ADA released their latest figures about the rise in diabetes (which is actually consistent with the rise worldwide)… and the cost of diabetes, I couldn’t help but wonder if we’re making all the progress we should be making.
So here’s a question for you:What could you buy if you had the combined revenue of Apple and Microsoft?Any other guesses??You could barely afford the cost of diabetes in the US: in 2012, $245B.Shocking, huh?
Even more shocking to see the how UNDER-funded diabetes research is by the US Federal Government.I am not saying the amount of money going into BC and AIDS research is high… rather the money being invested in diabetes research is grossly insufficient.Yet advocates in cancer and HIV/AIDS earned the level of gov. support that they enjoy today.---Diabetes patients: 26 million - $1.1 billionHIV/AIDS: 1,100,070 - $3.1 billionBreast cancer: 209,056 - $711 million
So, I have spent some time trying to learn from what advocates in other conditions have done better than us in diabetes.For instance, I learned about the National Cancer Act, signed by Richard Nixon in 1971, generally viewed as the beginning of the war on cancer.
And I learned that AIDS (just like cancer) has its own Government web site: AIDS.gov
So naturally I decided to type in “diabetes.gov” and I hit a dead end.To be fair, it’s not that there is no gov agency tasked with diabetes, but it just happens to be bundled within NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases), one of the National Institutes of Health“Conducts and supports research on kidney, urologic, hematologic, digestive, metabolic and endocrine diseases, as well as on diabetes and nutrition.”
This may feel a bit pessimistic… But there’s light at the end of the tunnel. We believe the work we are taking on within our Diabetes Advocates program can be key to help overturn things.
To tell you more about what is going on within the Diabetes Advocates program, I want to turn it over to @MrMikeLawson…Hello, I am Mike…Within the DA program, we seek to accelerate and amplify the efforts of champions dedicated to improving the lives of PWD.More than 100 members connect regularly through the Diabetes Advocates private social network.Can any DA members please raise your hands? Within the program we are building capacity through:-Scholarships (8 this year), so they can attend conferences like ADA, AADE, and others.-Micro-grants (9 in 2012), to support their diabetes awareness efforts, and -Training programs (a growing component of the program in 2013), to make us more effective at our advocacy work.The program is free to members, thanks to the support we’ve received from Novo Nordisk, Sanofi, Lilly, and J&J.Membership is based on active participation in advocacy, including initiatives aimed at reducing the stigma associated to diabetes, educating the media and the public at large about diabetes and what it’s like to live with it, and getting more involved in the regulatory conversation, making the patient voice louder.We are doing all of this through partnerships, with our members working in projects together, and also collaborating more and more with AADE, TCOYD, ADA, JDRF, Endocrine Society, and many other nonprofit and not-just-for-profit groups and individuals.We are working to build more paths for members in our online communities to become engaged in advocacy, so we can increase the impact that we as activated members of the diabetes community can have.
You just heard from Mike, and previously from Emily Coles.But we have a staff of 6 that works alongside incredibly committed volunteers at Diabetes Hands Foundation:-We have Heather Gabel, Administrative & Programs Assistant (Heather, raise your hand!), -Emily Walton, our Business Manager, whom most of you interacted with prior to today. And, -We have our fearless Development Manager, CorinnaCornejo, working remotely from Hawaii. I am trying to convince our board to hold an upcoming board meeting there, but it hasn’t happened yet. ;)This team is 2X as large as it was JUST 2 years ago. And I want to acknowledge now the support that we’ve received from The Helmsley Trust (guys!) for making this possible.Thanks to their capacity building grants in 2011 and 2012, we can reach and engage more people like Reed in our communities, we can better serve the needs of diabetes advocates, we can be better prepared to deal with uncertainty, and have a more robust organization that can continue to bring together people touched by diabetes for positive change, to make sure that nobody living with this condition ever feels alone.
And HERE you can see how well those cartoons reflect our true selves! ;)
Before I leave you today, I want to tell you about the last of our programs, one that is very near and dear to me, because of what it does:The Big Blue Test.In the Big Blue Test, we encourage participants to test their blood sugar, exercise for 14-20 minutes, test again and share their results on BigBlueTest.org or on the Big Blue Test app (show it).When people do this, They see on average a 20% drop in blood sugars: in fact, for the second year in a row, we have a BBT poster we invite you to come check out on Monday 12-2.Every time someone logs a BBT result, a matching donation is made to help people with diabetes in need.So there are two sides to the program: one focused on people helping themselves (through exercise) and one focused on helping others…
To give you a sense of the type of impact this program has had in the past 3 years, please take a moment to watch this video:PLAY3 Big Blue Test grantees are with us today:Dr. Nancy Larco, from (from the video ),Dr. Mark Atkison (from Insulin for Life USA), and Dr. Nick Cutriss (from AYUDA)We’re thankful for Roche’s support of the program between 2010 and 2012. As a result of more than 40,000 Big Blue Test entries, a quarter million dollars were awarded in Big Blue Test grants to groups like these.So far, this year, Tandem and Perrigo have risen up to the challenge, joining the program as co-sponsors, but we need more support. Come talk to me or Mike afterwards if you are interested in helping programs like these through the Big Blue Test, while reinforcing the importance of exercise in diabetes management.
Sometimes, we get so carried away with the research papers, the clinical trials, the prescriptions, the reimbursement, the medical records, the fundraising… all those details…That we can lose sight of what matters most: all people touched by this condition, and the fact that most of the time, most of us are alone. SO before you leave today, I want to leave you with this message:“No one living with diabetes should ever feel alone.”** Because diabetes is chronic, with us 24/7. We don’t leave it in the office: we bring it everywhere we go.** Because diabetes is a self-management condition.** Because we don’t yet have a cure (though there are many in this room that are working very hard to get it)** Because we can have a bigger purpose in life when we help ourselves and help others.**Because we can drive a very large movement to generate positive change in our community when we connect with others like ourselves.So PLEASE join us in making this vision a reality!I am convinced we can do it, but ONLY if we work together.Thank you!You are welcome to stick around until 6:30.
Transcript of "Cocktails & Carbs Chicago: an introduction to Diabetes Hands Foundation during ADA 2013"
NIH Biomedical Research Allocations