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Even So, Joy

    • A Brighter Blueprint
    • Books by Lesa
    • Ponderings
    • Who Are We?
      • Tori’s Bucket List
      • Isaiah & Caleb’s Adventure List
    • Meet Lesa Brackbill
      • Biography & Experience
      • Strengths & Values
      • Media Appearances & Speaking Engagements
      • Songs by Lesa
    • Even So, Joy
      • Playlists for Even So, Joy, and A Brighter Blueprint

Tag: Leukodystrophy

  • From Diagnosis to Determination

    From Diagnosis to Determination

    February 13, 2024
  • Looking Back at 2023 (Our Christmas Letter)

    Looking Back at 2023 (Our Christmas Letter)

    December 11, 2023
  • Community Stories: Tori

    Community Stories: Tori

    September 14, 2023
  • InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues

    InvestigateTV Episode about Krabbe Disease Newborn Screening and NBS Funding Issues

    May 22, 2023
  • Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP

    Public Comments to the ACHDNC about their Decision to not add Krabbe Disease to the RUSP

    May 4, 2023
  • Our Visit to Forge Biologics

    Our Visit to Forge Biologics

    February 14, 2023
  • Speechless (and a little angry) at the ACHDNC

    Speechless (and a little angry) at the ACHDNC

    February 14, 2023
  • Eight

    Eight

    July 30, 2022
  • Krabbe Moved Forward to Full Evidence Review

    Krabbe Moved Forward to Full Evidence Review

    May 13, 2022
  • A New Chapter Begins

    A New Chapter Begins

    April 12, 2022
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Even So, Joy

Weaving a Brighter Blueprint for Advocacy, Legacy, and Life.

I share lessons, setbacks, and small victories from the journey of turning advocacy into lasting, systemic change.

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    • A Brighter Blueprint
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      • Strengths & Values
      • Media Appearances & Speaking Engagements
      • Songs by Lesa
    • Even So, Joy
      • Playlists for Even So, Joy, and A Brighter Blueprint

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