A message from Cyndi Zagieboylo: Activists effect change with storytelling

Become an MS activist and help improve access for people living with the disease.

by Cyndi Zagieboylo

“Fighting for access” features a trio of dedicated activists who are getting in front of lawmakers and describing their needs for greater access to quality healthcare and affordable multiple sclerosis medications. They are telling their stories, and real-life storytelling can be powerful.

Legislators are elected by the public, by us, to represent us, their constituents. They need to know what we want, what is in the way of living a better life. Storytelling is a tried-and-true method to influence legislators, and the good news is that everyone can do it.

As stated in our FY22–24 Strategic Plan, we aim to improve access to personalized, affordable, high-quality healthcare so that healthcare and MS medications will be easy to access and affordable.

As Bari Talente, executive vice president of advocacy and healthcare access, says, “We know that early and ongoing treatment with an MS disease-modifying therapy is the best way people can manage the course of their disease, slow down the progression of disability and protect their brain from MS damage. That means that people need to be able to find a medication that works for them, and they need to be able to stay on it.”

There is a gap between what people should have and what many people have access to. The medications needed can be out of reach because of exorbitant costs and obstacles from insurance carriers. Some people make decisions about their healthcare based on what they can afford. They might stop taking their MS medications or take less than prescribed to try to make it last longer. This can lead to more disability and relapses.

We need to raise awareness about the gap between what should be and what is. That’s why activists are so important. Chances are you have a story to tell. You could help amplify the voices of other people affected by MS. And by telling your story, you can influence lawmakers. You can cause change and improve the state of the world. The first step is easy. Join our Action Alert network and become an MS activist yourself. 

Start now and share your story with me. Do you have challenges receiving high-quality healthcare or accessing the MS medication that’s right for you? I’d love to hear from you.

Let’s keep in touch.

Cyndi Zagieboylo
President & CEO
National MS Society

Let me know your thoughts. Email me at cyndi@nmss.org.