The Power of Community: Supporting One Young Man with Narcolepsy Lifts Us All

by julie on March 31, 2020

These are unprecedented times in the wake of COVID-19. I am sending virtual hugs, healthy vibes and restful nights to each of you. During a time when things feel pretty heavy, I wanted to share a heart-lifting story from my past week.

Background:

In late February/early March, Project Sleep (in conjunction with the Sleep Research Society) conducted a big “action alert” asking advocates to reach out to their Representatives across the US. The community rallied together incredibly, and as a result, a remarkable 41 Members of the U.S. House of Representatives signing onto an important letter advancing our sleep research and awareness priorities!

That was huge for the House side, but next we needed to work on the Senate side.

Team Missouri:

On the Senate side, we conducted a more “targeted” effort, preparing a letter to Senator Roy Blunt of Missouri, because he serves as the chairman of an important subcommittee that will make decisions regarding the possible CDC sleep awareness efforts. 

Last week, I contacted a few Missouri patient advocates to ask them to consider signing onto the letter to their Senator Blunt, and one advocate, Karin offered to gather additional Missouri advocates to sign on! She asked how many names might be impactful… I reported back that a dozen or two dozen would be amazing. 

Corresponding with Karin:

And then yesterday, I opened my email to find that Karin had rallied an incredible 47 individuals and families in Missouri to sign onto the letter, all in support of one young man in their community living with narcolepsy with cataplexy. Karin wrote:

Julie:  Please add the attached list of advocates from the state of Missouri in support of this letter. 

We have a young man in our lives who is living with narcolepsy with cataplexy, and any funds which can be obtained to educate professionals and the public about these types of disorders has our full support. 

I wrote back to Karin:

Karin,

Thank you so much for this message and incredible news!! WOW! You’ve collected so many names, you did such a tremendous job and this list of supporters will go so far with Senator Blunt’s office.

Getting your email also brings me to tears today, because, of course, it is such a challenging time for so many people and so much feels out of our control. So to see you and your community rally behind this young man’s experience this way, and organize with us to advance research and awareness for a brighter future, it truly means everything and lifts my heart. 

I was already feeling emotional when I received Karin’s reply:

Julie:  Happy to help! 

I told our group that sometimes I think, “It’s just an email, and what is that going to do?” but if nothing else maybe we are helping to renew the energy of great people, like you, who continue to fight for the cause!

Sending love, strength in low times, and gratitude for all you do!  Keep fighting…..there are a whole bunch of us wild and crazy (but good-hearted) people out here who support you!

The Power of Community

And then I just lost it, crying to myself in my apartment (as I practice good “social distancing” and “sheltering in place” at home in Los Angeles, CA). 

Often in advocacy or awareness, we don’t know which precise actions will lead to the “big change” we are working towards. While I do believe that Karin and the Missouri advocates actions will help advance sleep awareness with Senator Blunt’s office, her efforts also lifted my spirits on a week when I needed a renewed sense of community and a good cry. 

We must hold onto hope right now. Even in the most challenging times, we must believe in ourselves, our loved ones and our communities. We must have faith that our actions DO matter and together, we are making a difference, in ways we can see and understand, and in many ways we cannot see or understand at the moment. 

Thank you to Karin for stepping up and exemplifying community.  We continue to rise by (virtually) lifting each other. Stay healthy and safe, friends!

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