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

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

2. Discussion • Introduction • Resources – nonprofit and for-profit organizations • Resources – social media • Conclusion

3. 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 About Us

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

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

9. #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. The diaTribe Patient’s Guide to Individualizing Therapy • 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? • 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? • 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? • How does your current weight compare to your goal? Has your weight changed recently or over the past year? • Do you have insurance? How much are you willing to pay out-of-pocket for diabetes therapy? PDF download at: www.diaTribe.org/patientguide

11. #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. From the JDRF homepage (www.JDRF.org)

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

14. #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. www.childrenwithdiabetes.com www. insulindependence.org

16. #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

18. #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. Discussion • Introduction • Resources – nonprofit and for-profit organizations • Resources – social media • Conclusion

20. 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. #1: Blogs There are scads and scads! • Six Until Me: www.sixuntilme.com • DiabetesMine: www.diabetesmine.com • Your Diabetes May Vary: www.ydmv.net • Scott’s Diabetes: www.scottsdiabetes.com • Diabetes Advocates: diabetesadvocates.org/resources-for-type-1-diabetes/ And many more!

22. #2: Social Media • Twitter • #DSMA • Facebook • YouTube • DSMA Live • Social Media for Social Good • Pinterest

23. #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: www.diaTribe.org • 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. #4: Online communities • Children with Diabetes: forums.childrenwithdiabetes.com • TuDiabetes: www.tudiabetes.org • Diabetes Daily: www.diabetesdaily.com • JDRF’s TypeOneNation: typeonenation.org • Glu: www.myglu.org • ADA: http://community.diabetes.org • Diabetic Connect: http://www.diabeticconnect.com

25. 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. 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. 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. 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. 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 50th anniversary issue at:http://diatribe.org/issues/50/diabetes-dialogue

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