The document discusses limitations of continuous glucose monitors and how patient communities worked to develop solutions like Nightscout and OpenAPS. It then talks about efforts in the type 1 diabetes prevention community, including discussing diet, supplements, and current research. The author expresses a willingness to participate in home testing and trials to help researchers, and asks about recommended genetic tests, inflammation markers, and prevention "cocktails".

2. THE CAVEATS

3. WHEN DIABETES CAME INTO OUR LIVES
May 2014July 4th, 2014July 7th, 2014July 8th, 2014July 9th, 2014

4. OUR ADVENTURES CONTINUED!

5. CGM BROUGHT INSIGHT, BUT WAS LIMITED
• Distance: you can never be more than 30 feet away from child
• Problematic for:
• School
• Sports
• Sleep overs
• Life
• Only one person with the receiver can know what is going on
• People sleep through alarms
• Diabetes fatigue / burn out
#WeAreNotWaiting was born when
parents created solutions for these
limitations, and started sharing them
with others

6. COWBOY HACKERS TO THE RESCUE
• Genius hackers reverse engineer existing medical equipment to build better tools
for consumers
• Picking up signal / data from receiver
• Decoding secure communication
• Raising the ire of device makers and one of their CEOs who labeled them “Rogue
Cowboy Hackers”
• Upload the data to the Cloud (MongoDB)

7. Nightscout – 4+ years
WHAT #WEARENOTWAITING LOOKS LIKE
OpenAPS (2.5 years ahead)
Pebble watchfaces
(2 years ahead)
Android APS & Loop Apps
(1.5+ years ahead)Multi-child monitoring in Romania
Reports with charts and
predicted A1C (3+ years)
Autotune – analyzes settings,
recommends changes (1+ years)

8. TRIALNET

9. ANTIBODIES

10. • Knowing you have no hope?
• Knowing you are going to have multiple kids with T1D?
• Knowing in advance?
• Angry, sad, fearful, cursed, depressed, like we are failing our kids
REALITY SINKS IN FOR US

11. #WEARENOTWAITING APPLIED TO PREVENTION
0
100
200
300
400
500
600
700
800
GAD65/GAD65H
0
0.1
0.2
0.3
0.4
0.5
0.6
0.7
0.8
ZNT8A
-5
0
5
10
15
20
25
ICA
0
50
100
150
200
250
ICA512/IA-2JH

12. WANTED TO HELP OTHER FAMILIES THAT WERE DESPERATE

13. STARTING COMMUNITY, SHARING INFORMATION
Common discussion topics in prevention group:
• Diet & nutrition
• Vitamins and supplements
• Current research
• Beta cell protection
• Environmental and/or viral triggers
• Vaccination

14. COMMUNITY IS WILLING TO HELP & PARTICIPATE

15. WHAT HAS MY FAMILY BEEN WILLING TO DO
• Home CGM testing for Julie and I (with
our own OGTT)
• Vitamins/supplements
• LDN
• Probiotics
• No Dairy (or A2 only)
• No gluten
• Lowish carb
• Food testing
• Anything else you geniuses could
recommend

16. GOALS
• What can the patient community do or provide to help researchers?
• Consensus on safe and effective and decently affordable components
• Affordable is debatable for people that are desperate, FYI
• What tests should we be doing to set baseline and monitor progress
• Genetic testing. What is the specific test? Something about Class 2.
• What tests should we be doing for inflammation?
• Find out what should be in the “cocktail” and dosing levels