September is both Newborn Screening Awareness Month and Leukodystrophy Awareness Month.
For the past decade, I’ve typically posted daily, which required weeks of prep and scheduling to ensure I did everything possible to educate my followers. I believe it was worthwhile, but this year, I’ve taken a different approach to simplify my workload and reach those who may not know my story.
My friend and fellow advocate, Kevin Alexander, invited me to write a guest column for his website, and I happily agreed. You can read it here. I also love that he pulled some quotes from my article and made graphics of them (below). That’s an idea I may have to borrow for the future. 😁
I also wanted to write a blog post for my company’s blog (as I’m celebrating a promotion to Director of Advocacy at Patient Advocacy Strategies), but I took a different approach this time in how I wrote about Newborn Screening. I wrote about the need to go beyond awareness alone, despite its importance.
Awareness is a good starting point,
but it’s not always enough to create
meaningful, systemic change.
Later this month, I’ll be speaking at an RDLA webinar about my unique entry into advocacy (i.e. not with an organization for years), which is something I’ve never discussed before. My hope is that I can inspire other advocates to take the initiative to start advocating for the change they desire to see, even if they aren’t employed by a foundation or other organization.
It’s been great to think about Newborn Screening and leukodystrophy from different angles, and I’ve really appreciated these opportunities. I think I’ve needed it after a year of such uncertainty when it comes to public health and Newborn Screening.
I’ve also been compiling all the advocacy learnings I’ve gained over the past ten years for a work project, and I’m eager to share it with you. I believe it will be beneficial to anyone wanting to make a difference!
Please take a moment to read these posts and share them with your networks if you would.
My friends and family are well aware of Newborn Screening, but yours may not be.
Every share helps us educate others.
Even So, Joy 
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