The Story Behind Danny’s Dose Alliance

In 2015, Darlene Shelton and her family founded Danny’s Dose Alliance after confronting a critical truth: despite all their efforts to ensure proper emergency care for their grandchildren with hemophilia B, outdated EMS protocols made those efforts virtually useless. The core issue was—and still is—that many states prohibit paramedics from administering patient-carried, life-saving medications or delivering specialized care outside of their defined Scope of Practice.

For patients with rare or chronic conditions, many of whom carry Class 4 or 5 specialty medications, this gap can be deadly. These medications are often only available at Level 1 Trauma Centers—of which there are typically just one to four per state—making immediate, on-site administration by EMS crucial.

As the Shelton family delved deeper, they began uncovering a troubling pattern of “bad calls” and preventable deaths due to delays in treatment. Their research expanded to identify additional conditions requiring specialized emergency care. Today, they’ve identified approximately 32 rare or chronic conditions impacting over 32 million Americans—11 of which involve patient-carried, time-critical medications, affecting more than 27 million individuals.

The Sheltons began their advocacy journey in Missouri, partnering with their state EMS association and forward-thinking legislators. They quickly discovered that the problem was not just a lack of protocols—it was a combination of conflicting regulations, liability concerns, and inadequate training. But they also saw a clear path forward, and the Danny’s Dose Alliance was born.

Named after Darlene’s oldest grandchild, the organization carries a powerful message: “Every family’s ‘Danny’—living with a rare or chronic medical condition—deserves to receive their life-saving DOSE of medication or proper treatment in an emergency.”

From this realization, Danny’s Dose was founded on three primary goals:

1. Advocate for modernized emergency treatment protocols, including regulatory clarity that empowers EMS personnel to administer patient-carried, time-critical medications.

2. Facilitate the establishment of nationally recognized Disease-Specific Emergency Guidelines and EMS education, ensuring consistency and safety in emergency care.

3. Equip families nationwide with Emergency Preparedness tools and education, while fostering strong, proactive relationships between affected families and their local emergency responders.

To date, Danny’s Dose Alliance has helped pass EMS protocol legislation in Missouri, Minnesota, and Arkansas, and has successfully influenced Scope of Practice changes in 16 additional states. Several more states are actively reviewing proposed updates. At the same time, the organization is exploring federal-level pathways to promote faster, nationwide consistency in care.

In collaboration with EMS professionals, emergency physicians, and disease experts, Darlene is now leading the creation of Disease-Specific Emergency Treatment Guidelines—a pioneering effort to close the education gap and standardize emergency responses for specialized conditions. Alongside this initiative, she has developed a comprehensive Emergency Preparedness curriculum tailored for families, helping them understand their critical role in emergency protection and empowering them to advocate confidently and effectively.

While Darlene is proud of the strides made so far, she recognizes the road ahead is still long. Far too many states have not update regulations, far too many emergency personnel remain unaware of the lifesaving changes made in their state and don’t have education, plus far too many patients live in fear and continue to suffer or lose their lives due to preventable delays in care.

Danny’s Dose Alliance needs your support to grow its reach and amplify its impact. Join us as we enter the next decade of Passion, Purpose, and Progress—pioneering change, saving lives, and shaping the future of specialized emergency care across the nation.