Danny’s Dose made some headlines recently, check it out!
The Shelton family found this out through another’s story. The Shelton’s have a son named Danny, who was diagnosed with severe hemophilia before he was a year old. They prepared as much as they could to make sure he would be safe wherever he was, whatever the circumstances.
Also from the LA Kelley Communications, Inc February Quarterly newsletter of “PEN”.
Lobbying for Specialized Emergency Treatment
Darlene Shelton founded Danny’s Dose Alliance after her ten-month old grandson was diagnosed with hemophilia. Although Danny always had his factor with him wherever he went, Darlene’s family learned that paramedics and ER workers were not allowed to administer the factor due to conflicting treatment protocols and liability fears. So Darlene sprang to action and formed Danny’s Dose with these goals in mind: (1) Raise awareness about the current gap in emergency treatment for people with rare diseases, chronic illnesses, and special medical needs; and see current protocols amended. (2) Assist with specialized education for EMS and ER personnel. (3) Provide education for affected families on how to better advocate for their treatment needs. The organization’s first goal was to amend protocols in the Sheltons’ home state of Missouri within two years. Darlene says, “Goals can be lofty, but I believe if you don’t set goals high, it removes some of the urgency.” After their proposed legislation was passed in Missouri, Darlene looked forward to their next goal. “We passed EMS legislation, assisted with the beginning of paramedic education, and are helping that grow in 2018 and beyond. Of course, we can’t be sure we will meet our five-year goal, but it looks promising, and we are determined to push hard.” Darlene hopes to have improved treatment protocols for ER and EMS in place across the entire US within five years of their first state, Missouri. The work of Danny’s Dose doesn’t just benefit people with hemophilia. “It benefits all individuals with special medical needs,” says Darlene, “covering rare disease and chronic illness. This covers those with rare, lifesaving meds.”