Our Time to Shine! Behind-the-Scenes of Project Sleep’s Recent Advocacy Initiative

by julie on March 31, 2019

I was scared.

I didn’t know if you’d come with me on this path.

We’d JUST finished the incredible record-breaking Sleep In 2019 campaign, with many of you giving time and spoons to support Project Sleep.

The very next day, I learned that our advocacy moment had arrived — yay!! But with a really quick turnaround deadline — gulp!! 

It was our time to shine – our time to show Congress, NIH, & CDC that people with sleep disorders were organized and taking action. I never doubted our community’s fierce passion for the cause, but I worried about the timing, on the heels of the Sleep In and with short turnaround. People are busy and spoons are limited.

Yet, I suppose some opportunities, like adversity, come on their own time, with little regard for our neat little schedules and plans. So we try our best to go with the flow (still hard for me, but working on it).

Here We Go…

As I raced to send out the advocacy action alert on Wednesday 3/13, we effectively had 9 business days to try to get 20 Representatives signed onto an important Congressional Letter. To achieve this, we had to:

  1. reach advocates across the country,
  2. help them reach their Representatives’ offices,
  3. conduct lots of follow up.

So yeah, I was worried. I created a cheesy poster-board to broadcast our progress via Facebook Live and Instagram.

And you showed up.

Even though the process was a bit complicated and some of our important emails went to your SPAM folders (true story). For a while, there was just one Representative listed on the poster (my own), then two…

You kept showing up, you emailed, you called, you shared your stories, and you enlisted friends and family to do the same. Collectively, the project included thousands of emails with nearly 200 patient advocates reaching over 100 congressional offices on Capitol Hill, reaching districts from New Hampshire to California, from Michigan to Alabama!

The day before our deadline, on Monday 3/25, I was doing work at a Starbucks when I learned that we’d reached our goal of 20 co-signers!! I smiled big, then my eyes welled with tears and I “laugh-cry-smiled” for the next 15 minutes (probably a bit odd looking to fellow Starbucks customers, but I could care less). I was on cloud 900!!

Knowing the family in West Virginia who had helped to secure this 20th Representative co-signer was extra special. We’d been in touch for many years now. This entire initiative was a family effort, as advocates included those living with sleep disorders AND their loved ones – sisters, brothers, mothers, fathers, husbands, wives, children, aunts, uncles, and friends too!  I could feel this LOVE and it gave me such a sense of pride and hope for our boarder “sleep family.”

A few hours later, I walked home from Starbucks with the early evening sun at my back. I think my feet touched the ground but it felt more like gliding in an aura of total contentment and joy. The power of this community was so alive and visceral in and around me. 

Standing at a crosswalk near my home, I looked down at my feet and noticed the sun stretching my legs way out in front of me. I thought of our community as this powerful force of sunshine, which had risen and shined so bright to stretch this effort far beyond where I could’ve gone alone. 

It sounds cheesy, but while you each took action from your homes across the nation, I was so lucky to witness your voices coming together into a chorus on Capitol Hill. If I close my eyes, I can picture our community’s voices and stories resonating down the fancy long hallways of the House Office Buildings over the past few weeks. 

Can you hear it? Can you hear us roar? I hope so, because CONGRESS heard us!!!

Meet the 31 Co-Signers

On Thursday, March 28, 2019, an astonishing 31members of the U.S. House of Representatives co-signed this bipartisan letter in support of sleep disorders research and sleep awareness at NIH, DoD and CDC. Importantly, 31 co-singers is considered a GREAT success by co-sign letter standards (so I’m told by people who know these things!). Plus, we raised amazing sleep disorders awareness at over 100 Congressional offices. Please read the OFFICIAL LETTER and Project Sleep’s full announcement – there’s important info there that I’m not going to repeat here on my personal blog.

For this personal blog post,  I just wanted to share how incredibly vulnerable I felt throughout this short but intense advocacy project and how incredibly uplifted I felt by your support!

Maybe it sounds silly, but because I’d publicly expressed our “20 co-signer goal,” I feared that NOT reaching this be a public failure and a huge missed opportunity for our community to show our strength and sense of urgency on the national stage. Opportunities don’t come around like this every day and I felt it was on me to help turn the community’s passion into tangible action.

(As a side note: A few friends suggested maybe I take this a bit too seriously/personally, and they are probably right, but that’s just me. Who cares? I care. A lot. My dad once described, after I lost a close squash match in college, that I put my heart fully into things; that I tended to care more than others dared to. He said this made my loses hurt more, but my wins more triumphant. I think that pretty much sums me up, for better or worse. And I think he would be proud to see how I’ve channelled that same approach in support of a cause so close to my heart.)

In closing, hope you will feel as proud as I do of our community’s achievement. Of course, I will continue to report back on next steps and outcomes via Project Sleep’s blog and e-updates. Advocacy is not a sprint, it is a marathon. But for today, we celebrate taking a big step forward!

Thank you for the opportunity to serve you and this remarkable community as we build a brighter future together.

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