January 21, 2026

PWD Advisory Meeting 01/21/2026 

Participants: Emily Coppedge, Rachael Lee, Amy Ohmer, Stacey Spirrison, Craig Bobik, Emma Mason, Irene Nejad, Marissa Town, Kristi Quairoli, Stephanie Ogburn, Emily DeWit, Sarah Dempsey, Nicole Rioles, Claire Rainey, Tim Bol  

Welcome and Introductions 

• Members introduced themselves, shared their connection to T1D, and a goal or area of excitement for 2026. 

Review of PWD/Family Resource Guides 

Emily Coppedge reviewed finalized reference guides now available in the PWD/Family Resources section: https://t1dx-qi.t1dexchange.org/committees/people-with-diabetes-advisory/  

• Discussing T1D with Non-Diabetes Specialists 

• Communicating/Advocating for Yourself 

• Caregiver Quick Reference Guide (interactive, practical tool for caregivers) 

Next Steps & Distribution Ideas: 

• Update form and add missing manufacturers (e.g., Gvoke, Omnipod) 

• Explore sharing resources with ADA Safe at School and Breakthrough T1D 

• Dissemination channels discussed: clinics, school nurses, PWD/families 

• Potential outreach ideas: 

• Share via Epic smart phrases and QR codes in discharge paperwork (Epic/Cerner) 

• Tandem reps (unbranded materials) 
• Media and community outreach 

Action Items: 

• Marissa to reach out to DiaTribe and Breakthrough T1D 
• Emily to reach out to the Juicebox Podcast 

Engaging Newly Diagnosed Families in Research 

The group brainstormed strategies to encourage participation in clinical trials for newly diagnosed individuals, acknowledging the emotional adjustment period after diagnosis. 

Key Points: 

• Parents are often in “survival mode” for the first 2 weeks; first 3 months are particularly challenging 

• There is a “sweet spot” for discussing trials once families are more emotionally stable 

• Social media (e.g., T1DX Facebook) can be an effective educational tool 

• ADA and Breakthrough T1D mentorship programs can help support families 

• “Bag of Hope” programs are helpful, though branded materials can be limiting 

• Emphasize local diabetes research centers 

Resources Shared: 

• Currently recruiting disease-modifying therapy trials: https://www.breakthrought1d.org/wp-content/uploads/2026/01/CurrentlyRecruitingDiseaseModifyingTherapy-Studies01082026.pdf  

• Breakthrough T1D clinical trial search and notification tool: https://www.breakthrought1d.org/clinical-trials/  

• Continuing education resources for healthcare professionals: https://www.breakthrought1d.org/healthcare-professional-education-and-resources/  

Discussion: T1D Screening 

• Fear of screening children remains a barrier for adults with T1D 

• Screening is the most effective way to reduce DKA risk and can be empowering 

• A negative screening result corresponds to <5% lifetime risk of developing T1D 

• Screening kits available at clinics could improve uptake 

Additional Resource: 

• Safiyah Basir’s T1D children’s books addressing screening: https://t1dexchange.org/safiyah-basirs-t1d-story-i-am-beautiful-i-am-powerful/  

Next meeting: Wednesday, April 8, 2026, 11:00 AM – 12:00 PM EST 

Meeting Recording: https://us02web.zoom.us/rec/share/HAIUW-jG3IxiaxDL5LRLXPcMZ78QbTGguMcO34GwL6cEkyFMAisxIadsR3OUmdzU.lll-We7PRofWHY01  

Passcode: K!^Z9dg.