SRNA’s Local Media Toolkit

SRNA Local Media Toolkit — Adapted from EveryLife Foundation’s Local Media Toolkit

It is still unfortunately the case that most people are unaware of the rare conditions the Siegel Rare Neuroimmune Association represents. Asking a stranger what AFM, NMOSD, or TM is will most likely cause the stranger to give a puzzled stare. It is our hope that this will not always be the case.
Recognizing that we still exist in a state of obscurity and are yet to breach the public’s consciousness and attain the same notoriety conditions such as multiple sclerosis, we are looking to implement a variety of solutions to generate awareness for our cause.

One such solution is getting our community members’ stories into local media. Local media includes local news stations, radio programs, and community newspapers. It is any resource made by people near you, for people near you. It exists digitally and physically.

Why is local media coverage important, when we want the whole world to know and understand the difficulties those with our rare neuroimmune disorders face?
There are quite a few reasons.

Firstly, local media is more likely to feature a story about a local resident. You already have an “in” with your local media just by being a local, and local media is always needing more stories.

Secondly, more Americans trust their local newspaper or television station more than national media outlets. The people in your area will often pay attention to local news in a way that is more personal than national or global news.

Thirdly, your state and federal policymakers read your local newspaper and watch your local television station. If they are aware of rare conditions and the difficulties our community faces, they in turn propose and vote for policies that help our cause.

Fourthly, imagine someone local in your area starts experiencing symptoms of a rare neuroimmune disorder. Knowing how our conditions present, and knowing to see a physician or visit the ER immediately upon having an attack can make a huge difference. How fast a patient receives treatment can very much determine the extent of the disability they may face after an attack, and in some cases, receiving treatment quickly can be life-saving.

Lastly, having awareness in any capacity in people who are not impacted by rare diseases, and leading them to non-profit organizations like SRNA means they may be inclined to donate. To be as clear as possible, the donations we receive to do the things we do and fund the research we need to fund, and donations often come from those impacted directly by rare neuroimmune disorders. Parents donate for the sake of their children, siblings for the sake of their sibling, and those diagnosed directly give to the cause. These donations are our lifeblood, but at the same time, it is the families who are impacted by rare neuroimmune disorders who so often need financial support. The physical and mental toll of these disorders can be difficult to bear, but when combined with the fiscal cost, it’s devastating. That is why we want people who are not impacted by these disorders to donate. We think local media coverage is a great way to inspire our local communities to do so.

How do you share your story with my local media? We first suggest finding local reporters. What are the news outlets nearest to you? Make a list of 3-5 outlets, their email addresses, and phone numbers. If you live in a small town like many of us, you may only have one media outlet. That’s okay!
Don’t know your local media outlets? Just Google the name of your area and “local media”. Try to find a reporter who has written similar stories or who covers health and/or politics. If you can’t find a specific reporter, the general email or general phone number will do.

Next, you’ll want to send these local media outlets your “pitch.” A story pitch is a description of a potential story and why it matters. A pitch can be delivered verbally or sent via email.

We recommend when writing your pitch that it include:

• A statement that you are a local resident.
• Why your story is important now (30th anniversary of SRNA)The main points of your story (No more than 3-4 sentences).
• Facts about the disease or issue, but localize the facts to your community as much as possible.
• A personal connection (Look up the reporter. Are they a parent? From your home town?)
• Your request that they cover your story (and help bring light to your important issue).
• Information about SRNA and other organizations that have been helpful in your journey, and consider encouraging would-be readers or listeners to donate to the cause.
• Photos or videos relevant to your story.
• Your name and contact information.

If you feel comfortable developing this pitch yourself, please feel free to use the list above as a guide. Otherwise, contact Ireland via email at [email protected] and she will be in touch shortly to assist you in writing it or helping to edit your pitch if you want any assistance with your wording or a second person to look it over.
After pitching your story, what is next? Please understand that if the first reporters you reach out to don’t respond or your story doesn’t get covered, it doesn’t mean that your story doesn’t have value. Consider trying another media outlet or try again when you have a different story angle. In the meantime, follow the reporter on social media in order to help build a relationship. Also, try submitting a letter to the editor or an opinion piece to your local newspaper. Check their website for submission guidelines.
What happens if your story does get covered? First off, congratulations! We recommend you share it on social media and any other sorts of blogs you have. If you have developments in your story, reach out to the reporter in 6-12 months to see if they are interested in a follow-up story. Also, please let us know if your story has been covered by the media.