This is a four-part media advocacy training led by Pulitzer Prize-winning journalist Matt Rocheleau, who is living with ALS. 

This guide offers strategies and insights on how individuals affected by ALS can effectively engage with the media to amplify their advocacy efforts. 

We encourage you to listen to the full videos below and reach out to us if you’d like more information. 

For more information, please email communications@als.org
 

Part 1: INTRODUCTION TO MEDIA ADVOCACY

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Be informed about ALS and the media landscape 

"It’s really crucial to be informed about ALS... so that you can educate others" - Rocheleau

Know the disease, its impact, and the latest developments to represent the cause accurately. Rocheleau stresses the importance of staying up-to-date on research, policies, and hyperlocal stories. 

Understand different types of ALS media stories 

Rocheleau outlines the common types of ALS stories covered in media:

1. Hyperlocal stories: Personal testimonials can have a significant emotional impact, potentially going viral.
2. Research developments: Stay on top of clinical trial news, both successes and setbacks.
3. Policy and legislation: Be aware of federal and state-level ALS-related legislation.

Leverage the power of personal stories 

Rocheleau notes that hyperlocal stories often evoke strong emotional reactions and can inspire people to take action. Sharing your personal ALS journey can “get people engaged and wanting to help."

Pitch to a broad range of media outlets 

"Get in front of media outlets... podcasts, TV, radio, even print newspapers."

Engaging with various platforms allows advocates to reach wider audiences.

Amplify ALS coverage 

Rocheleau emphasizes the importance of retweeting, sharing, and amplifying existing ALS coverage.

“The more these stories spread, the more conversations they inspire." 

This can lead to follow-up coverage from media outlets that monitor story performance.

Stay up to date with tools 

Use tools like Google Alerts, RSS feeds, and social media to track ALS-related developments.

"Once you've got [Google Alerts] set up, you just sit back, and the information comes to you."

"On social media... follow ALS advocacy organizations, researchers, medical institutions."

Drive positive change

Rocheleau highlights that advocacy and journalism share the common goal of driving social change.

“Journalists are constantly looking to do stories that drive change... the goals of media advocates and journalists are aligned."

Other considerations:

"There are people out there who know nothing about ALS... I was one of those people before I was diagnosed."

"Don’t sleep on the power of a personal story."

"It’s your mission to explain what ALS is, why people should care, and how they can get involved."

Final advice:

To be the best advocate, Rocheleau encourages staying well-informed and sharing that information with those outside the ALS community. Together, this collective effort can inspire others to join the fight against ALS. By following Rocheleau’s guidance, ALS advocates can maximize their impact by effectively engaging with media outlets, sharing personal stories, and keeping up-to-date on the latest ALS developments.