Being an effective rare disease advocate takes perseverance and patience, but it also takes funding. No one knows that better than Danny’s Dose Alliance founder Darlene Shelton. Danny’s Dose is leading the charge to change rules throughout the United States to make it easier for frontline responders to administer specialized treatment or patient-carried specialty medication to those living with rare or chronic conditions.
To support the efforts of Shelton and Danny’s Dose, CSL Behring awarded the group a $10,000 Local Empowerment for Advocacy Development (LEAD) Grant.
Danny’s Dose takes its name from Shelton’s grandson, who has hemophilia and needs factor replacement treatment to manage his bleeding disorder. Efforts from Danny’s Dose have already led to rule changes in three states: Missouri, Minnesota and Louisiana. Shelton plans to use the LEAD Grant funding to support her efforts in Arkansas and Illinois, including bringing patients and their families to state capitols to tell lawmakers why these changes are so vitally needed.
“You can build better relationships face-to-face,” Shelton said. “We know that families that live with rare and chronic conditions may not have extra resources, especially to drive into the capital. So this funding could mean breakfast, lunch or dinner for them or maybe even spending the night.”
Danny’s Dose is one of several rare disease groups receiving a LEAD Grant this year. The others include:
- Colorado Chapter of the National Hemophilia Foundation
- US Hereditary Angioedema Association (HAEA)
- Hemophilia Association of Minnesota/Dakotas
- New England Bleeding Disorders Advocacy Coalition
- Ohio Bleeding Disorders Council
LEAD Grants are available to qualifying organizations in the U.S. and Europe. Click here to apply or to find out more.