2024 in Review: Personal & Advocacy-Related

Written by lesabrackbill

This year marked my fifth year in advocacy as a career, and it was the most fulfilling year to date. I not only grew personally and professionally, but I made connections and had opportunities come my way that still feel like a dream.

And yet, it’s also the year when I was reminded the most of the great loss that brought all of this into being. What I am sharing in this post comes from a place of humility, of gratitude, and of dedication to the legacy I am giving to our daughter as I work to make the world a better place for those impacted by treatable rare diseases.

Nothing I accomplished this year would have happened if it weren’t for my Tori. ❤

In May, I finished my master’s degree after two years of studying, reading, writing, and growing. This was only made possible because of Brennan’s support and willingness to take care of the boys by himself so I could do homework.

Leukodystrophy Newborn Screening Updates

The most important thing that happened in the Leukodystrophy NBS community this year was the addition of Krabbe disease to the RUSP on July 1, 2024. This means that we should see every state screening for Krabbe disease by 2028!

We also submitted the RUSP nomination for MLD (after FDA approval of the gene therapy) and I have been involved in those NBS efforts as well.

See my strategic analysis here or here and visit my new (and very under construction) website to learn more about effective Newborn Screening advocacy.

Highlights

  • I was featured in a new series of Newborn Screening videos by the CDC.
  • I gave eight presentations at conferences.
  • I was a guest on three podcasts.
  • I traveled extensively:
    • WORLD Symposium in San Diego
    • Pennsylvania Capitol (March 18 and Oct 1 – presented)
    • KTRN in Minneapolis (presented)
    • Philadelphia (MLD NBS Alliance Summit, LSPA Patient Summit, Cure MSD – presented at all three)
    • ULF Conference (presented three times) in Chicago
    • EveryLife NBS Boot Camp/CDC NBS Lab Tour (Atlanta)
    • Global Genes (Kansas City)
    • APHL NBS Symposium (Omaha)
    • KrabbeConnect board meeting (Minneapolis)
    • Washington, D.C. (APHL meeting, EveryLife Community Congress meeting)

In total, I traveled to ten states and D.C. (five states were new for me), two new countries, and one new continent in 2024 as part of my advocacy work. Being able to achieve personal goals while making a difference professionally is a dream come true!

In November, I started a new position as Associate Director of Advocacy at Patient Advocacy Strategies. This happened at just the right time – I wasn’t looking for it, it found me, and it has been a great fit so far! I’m also working on an NBS Roadmap project with the EveryLife Foundation, and it’s such an honor to be included.

Throughout 2024, as I began to put together presentations about how to advocate, I realized that this might just be my niche. I have real-life experience with effective (and ineffective) advocacy and I began to develop a curriculum to better equip advocates who want to impact their world.

You can see that curriculum here.

Effective advocacy begins with strategic communication.

I believe there are eight components of effective advocacy:

Overall, 2024 brought some chapters to a close and opened new ones, and I look forward to what 2025 will bring.

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