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Type 1 Diabetes Today: What Resources Are Out There? Kelly L. Close, MBA March 2, 2013.

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Presentation on theme: "Type 1 Diabetes Today: What Resources Are Out There? Kelly L. Close, MBA March 2, 2013."— Presentation transcript:

1 Type 1 Diabetes Today: What Resources Are Out There? Kelly L. Close, MBA March 2, 2013

2 | Confidential2 Discussion Introduction Resources – nonprofit and for-profit organizations Resources – social media Conclusion

3 | Confidential3 About Us Close Concerns: founded in 2002 as a healthcare information company focused on diabetes and obesity Our mission: to improve patient outcomes by sharing information and insights about diabetes and obesity diaTribe: founded in 2006, a monthly research and product newsletter for people with diabetes. Nearly 20,000 readers have joined diaTribe’s patient advisory board

4 | Confidential4 About Us: Kelly president of Close Concerns type 1 diabetes: 25 years injections taken: 18,000 test strips used: 38,951 years on a traditional pump: 5 years on a disposable pump: 8 years using CGM: 8 years on Symlin: 7 years on GLP-1 (Victoza/Bydureon): 1 years having lots of hypoglycemia: 24 children: 3 years I want to live: lots

5 | Confidential5 Key Questions I’ll Try to Help Answer Why do I care about resources? Who can help? What is the diabetes online community (DOC)? What does the DOC mean for people in diabetes? How do I find it? 1 2

6 | Confidential6 First set of questions Why do I care about resources? So many are able to help us! Diabetes can be really hard or much easier Best case, we do better than we would had we not even had diabetes Experience really helps Life is so much better today 1

7 | Confidential7 First set of questions Who can help? #1: Healthcare providers #2: JDRF #3: Other families like yours #4: Books #5: Curiosity 1

8 | Confidential8 Discussion Introduction Resources – nonprofit and for-profit organizations Resources – social media and real people Conclusion

9 | Confidential9 #1: Healthcare providers Think of your relationship as a working partnership Have questions and ask for advice Stay in touch Go to appointments prepared to discuss areas where you need help Implications Knowledge really is power You are your own best advocate Asking for things is a really good idea

10 | Confidential10 The diaTribe Patient’s Guide to Individualizing Therapy 1.What was your last A1c? How does it compare to the goal you and your healthcare provider are targeting? How has your A1c changed over the last year? 2.If you are not at your A1c target, what actions could you take to improve it? Would you benefit by more closely analyzing your blood glucose readings to identify patterns? Do you focus on A1c, daily glucose patterns and glycemic variability, or both? 3.Do you frequently experience hypoglycemia? If so, why do you believe these episodes are occurring? What tools or techniques have you considered to reduce this risk, and to monitor it? Does your hypoglycemia limit your daily activities, sense of control, or independence? 4.How does your current weight compare to your goal? Has your weight changed recently or over the past year? 5.Do you have insurance? How much are you willing to pay out-of-pocket for diabetes therapy? PDF download at:

11 | Confidential11 #2: JDRF Incredible volunteer organization and leadership Compelling history Profound commitment to type 1, both now (treat) and in the future (cure) Implications JDRF has seen everything A parent of a child with type 1 diabetes runs JDRF The organization is looking out for you and yours

12 | Confidential12 From the JDRF homepage (www.JDRF.org)

13 | Confidential13 jdrf.org/life-with-t1d/frequently-asked-questions/

14 | Confidential14 #3: Other families like yours Tens of thousands of children are diagnosed each year - and do remarkably well! Other families are going through what you are Perspective is critical Offline connection is as important as online – Children with Diabetes’ Annual Friends for Life Conference, Insulindependence Implications You want the latest You want someone that understands In-person and live is good

15 | Confidential15 www. insulindependence.org

16 | Confidential16 #4: Books Cheating Destiny by James Hirsch Thinking Like a Pancreas by Gary Scheiner Pumping Insulin by John Walsh Diabetes Burnout by Dr. William Polonsky My Beloved World by Sonia Sotomayor Shot: Staying Alive with Diabetes by Amy Ryan Diabesity by Dr. Francine Kaufman Targeting a Cure for Type 1 Diabetes: How will we have to wait? The Power of Habit by Charles Duhigg

17 | Confidential17

18 | Confidential18 #5: Curiosity Think of every day as a learning experience Keep asking questions Read and stay up to date Track what works and what doesn’t Listening is very key Implications There has never been a better time to be diagnosed There is so much for which to be thankful Feeling impatient is very understandable Getting a great CDE is a must – Gary Scheiner is online

19 | Confidential19 Discussion Introduction Resources – nonprofit and for-profit organizations Resources – social media Conclusion

20 | Confidential20 What is the diabetes online community (DOC)? What does the DOC mean for people in diabetes? How do I find it? Blogs Social media Websites Online communities 2

21 | Confidential21 #1: Blogs There are scads and scads! Six Until Me: DiabetesMine: Your Diabetes May Vary: Scott’s Diabetes: Diabetes Advocates: diabetesadvocates.org/resources-for-type-1- diabetes/ And many more!

22 | Confidential22 #2: Social Media Twitter –#DSMA Facebook YouTube DSMA Live Social Media for Social Good Pinterest

23 | Confidential23 #3: Websites JDRF: jdrf.org/life-with-t1d/ ADA: diabetes.org/diabetes-basics/type-1/ IDF: IDF.org Joslin Diabetes Center: blog.joslin.org diaTribe: Glucose monitoring companies: Abbott, Bayer, Dexcom, J&J (LifeScan), Medtronic, Roche, Sanofi Pump companies: Animas, Insulet, Medtronic, Roche, Tandem Insulin companies: Lilly, Novo Nordisk, Sanofi

24 | Confidential24 #4: Online communities Children with Diabetes: forums.childrenwithdiabetes.com TuDiabetes: Diabetes Daily: JDRF’s TypeOneNation: typeonenation.org Glu: ADA: Diabetic Connect:

25 | Confidential25 Conclusions Find resources and sources of support Stay curious and keep learning Stay positive! Some closing thoughts and advice from our diaTribe advisory board…

26 | Confidential26 Quotable quotes! “While diabetes is a serious disease that can be quite harmful to one's health, what is most critical for everyone to know is that you can live a long and healthy life with diabetes. While poorly managed diabetes is the leading cause of most of the scary long-term complications, well-managed diabetes is the leading cause of...nothing!” “If at all possible, don't do diabetes alone. Managing diabetes day after day is so much easier when you have people in your life who are rooting for you. So think about what you need and who you could ask. Reach out to a good friend, a family member, a neighbor, a coworker, or even someone you meet through social media. It can be anybody!” -Dr. William H. Polonsky, PhD, CDE, Behavioral Diabetes Institute, San Diego, CA

27 | Confidential27 Quotable quotes! “Living with type 1 diabetes is an ultra marathon, not a sprint, and success comes from the run, not the place in which you finish. Remain in the game and don't let the minor variations in the path distract you from the goal: simply finishing the race.” -Jeff Hitchcock, Founder, Children with Diabetes

28 | Confidential28 Quotable quotes! “When your glucoses are in target, take credit. When your glucoses are out of range, blame the diabetes and vow to make better choices tomorrow.” -Dr. Howard Wolpert, Joslin Diabetes Center, Boston, MA

29 | Confidential29 Quotable quotes! “It now seems clear that huge advances in diabetes technology – in the form of automatic glucose control systems – will be here within the next five years. In the meantime, you should use a CGM as much as possible.” -Dr. Edward Damiano, Boston University, Boston, MA Read all the top advice from our diaTribe advisory board in our 50 th anniversary issue at:

30 | Confidential30 A special thanks to all the researchers working towards a cure!

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