Updated: April 8, 2021
Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story.
On April 28th, advocates will be talking to Congress for our Virtual Day on the Hill. Whether you are participating or not, the National Foundation for Ectodermal Dysplasias would like a copy of your story and a photo that we could share with your legislators. We could also use your story to raise awareness and drive action on our social media.
Here are some tips to help you prepare your story.
Keep your language simple.
People affected by congenital anomalies are often affected by syndromes and symptoms which have complex medical names. Don’t lose them in medical jargon. For advocacy purposes, choose simple language that paints the picture. For example, instead of saying you are affected by hypodontia, indicate that you are missing 25 of the 32 teeth an adult would typically have.
Don’t use too many statistics. If you do, be sure to have a reliable source.
Keep it short.
Legislators and their staff are busy. You need to be succinct and catch their attention. This applies whether you are writing a letter, sending an email, meeting in person or making a phone call. You have a limited amount of time. All good stories have a beginning, middle, and an end. Introduce yourself and briefly tell your story. Focus on two key messages about ELSA. Ask them to take action.
Passionately tell your story in a way that the legislator will FEEL something and be moved to action. Talk about the impact of not having teeth. Paint a detailed picture of what that means for you or your child in daily life – (while staying brief!).
Explain the sacrifices you have made to get teeth or to not have teeth. Address the financial burdens of dental treatment. Talk from the heart. Use sights, sounds, smells, tastes and touch being in the story if helpful so the legislator will act upon how they felt. Help them connect with the emotion you are trying to convey.
Use strong words.
Use verbs, action words or other strong words. Talk about how you and the NFED are fighting for a solution to the problem. You want them to be rooting for you and/or your child.
Explain the solution.
ELSA would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. Explain that it would close a loophole in the current law.
Make a clear ask.
Legislators need to know exactly what you want them to do. Tell them at the beginning of your story and repeat it at the end.
Please co-sponsor the Ensuring Lasting Smiles Act (S.754/H.R.1916).
Thanks for co-sponsoring the Ensuring Lasting Smiles Act S.754/H.R.1916). Can you help us get other senators (or representatives) to co-sponsor, too?
Write it down.
Start by writing it all down. Read your story out loud to see how long it takes to read it. Practice it. If it’s a letter or email, try to keep your story to 300 words. Ask someone else to read it and have them react.
Edit and re-edit your story to make it better. Rehearse it if you are using it for a legislative meeting so you get better at telling it and to help you stay on point.
Use a sound bite.
If you are asked questions in a meeting or phone call, try to answer the question with 2-3 sentences. Think about your answers as if they were “sound bites” on television.
Be polite and listen.
Don’t be argumentative if you are meeting on the phone or in-person. Take notes of any issues or concerns they raise.
Know your information.
Always be honest and accurate about the information you share. When you are representing the NFED, always know our positions and that you are stating those positions clearly.
Preparing your story and practicing how to tell it are what’s going to make you a successful advocate!
We have several samples of family stories on our Advocacy Resources page.