Advocates from NHF's Washington Days 2019

The Secrets of Bleeding Disorders Advocacy

Washington Days attendees share their wisdom

What has surprised you about federal advocacy?

“When I first started coming to Washington Days 18 years ago, I was a little disappointed not to meet with the congressmen and senators. I learned that it’s the staffers who will drive it…They get the stuff done.”

—Deborah Adamkin, Fort Lauderdale, Florida


Why is advocacy so important, especially for young people?

“Some of the older members of our community had to learn to speak up for themselves because they were more impacted by physical disability and with the bad blood product out there. Today’s kids really haven’t had to deal with anything major like that, but it’s probably going to come. It’s better to start learning now rather than being caught by surprise in a crisis and having no clue how to talk to a legislator.”

—Timothy Stowers, Oxnard, California


What was the most exciting part of the day?

“Actually seeing the representatives and senators. I’ve only seen them on CNN, so that was really neat—shaking their hands and actually speaking to them.”

—Milton Kamala, Louisville, Kentucky


How do you prepare for advocacy meetings?

“I practiced a lot. I had my story typed on my phone and I would delete it and then retype it to make sure I felt comfortable with it. I also practiced with my co-worker, who was practicing, too. I also helped the teens we brought to Washington Days through our Future Leaders program. My co-worker and I did mock interviews with them and role-playing scenarios where one person was the legislator and the other was the constituent.”

—Steven Fraden, Laveen, Arizona


What are your top advocacy tips?

“Organize who’s going to say what before you go in. Tell personal stories. And keep it focused…If it’s not about bleeding disorders, it’s not worth talking about!” 

—Barbara Gordon, New York City


What was your main message today?

“The importance of the Affordable Care Act. I had a baby last year, so I explained that if we didn’t have the ACA in place, I could have hit my cap for the year or even possibly my lifetime…The ACA has allowed me to live life like a normal person.” 

—Elisabeth Skaggs, Grove City, Ohio


What advice would you give other Washington Days participants?

“Comfortable shoes!”

—William Patsakos, New York City