What happens when the systems we rely on fail in an emergency? In this powerful episode, host Kai M Sorensen speaks with Darlene Shelton, founder of Danny’s Dose, about the terrifying realization that EMS responders are often not permitted to administer life-saving medications carried by individuals with rare diseases—including those with Hemophilia B.

What began as a grandmother’s attempt to protect her grandson Danny after his diagnosis has grown into a national movement for emergency protocol reform. Darlene shares how an unexpected conversation with Coalition President Wayne Cook opened her eyes to a dangerous gap in care—and how she turned fear into focused, inclusive, and deeply respectful advocacy. Her message: You don’t have to be an expert to make change—you just have to show up.

What You’ll Learn:

• Why EMS providers are often prohibited from giving critical medication in emergencies
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• How to build a local emergency plan that could save your child’s life
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• The story behind founding Danny’s Dose and how it’s changing policy in 19 states
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• What “being Bob” means and how families can take simple steps to protect themselves
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• Why relationship-building (not rage) is key to successful advocacy
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• The power of rare disease families working together toward systemic change

Episode Highlights:

• [00:00] Welcome + how Darlene’s family joined the Hemophilia B community
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• [03:52] The terrifying realization: emergency protocols don’t always allow life-saving meds
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• [05:51] A call to EMS reveals the truth—her family’s plan was the exception, not the rule
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• [08:45] Turning frustration into action through state-level advocacy
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• [10:45] “If a 3-year-old can mix it, a paramedic can give it.”
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• [12:07] Why she didn’t call it advocacy—just common sense and determination
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• [14:56] From one condition to 32 million lives impacted by outdated protocols
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• [16:52] Action families can take today: visit EMS, build local relationships, and “Be Bob”
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• [21:06] Why your call to EMS might ripple all the way to state reform
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• [24:44] Announcing the first national EMS guidelines for bleeding disorders

Meet the Guest:

Darlene Shelton is the founder and president of Danny’s Dose, a nonprofit advocating for emergency protocol reform to ensure EMS providers are equipped and permitted to administer life-saving medications for patients with rare diseases. Her work, born from personal experience, has helped change laws or regulations in 19 states and continues to empower families to become part of the solution.

Tools, Frameworks, or Strategies Mentioned:

• “Be Bob” protocol: medication, prescription label, emergency orders, medical alert necklace
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• State EMS Associations and Medical Directors
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• Treatment plans for EMS including helicopter landing procedures
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• New National EMS Clinical Guidelines for Bleeding Disorders
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• Website resources: 8 Steps to Protection, meeting guides, downloadable tools

Closing Insight & CTA:

“Build friendships. Be part of the solution. Don’t go in to blame—go in to create change together.” Your voice matters. Visit your EMS station. Call your state representative. Share your story. Darlene reminds us that lasting change starts with a single conversation—and that no family should have to fear being unprotected in an emergency.

Resource & Links:

• Danny’s Dose Website: https://www.dannysdose.org/
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• Emergency Preparedness Checklist: https://www.dannysdose.org/emergency-preparedness
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• The Coalition for Hemophilia B: https://www.hemob.org/
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• Balancing Life’s Issues: https://balancinglifesissues.com/podcast-bli/
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• Boundless B Podcast Page: https://pod.link/1765188875