Yaya Foundation Leadership Transition

Following two highly impactful years at the Yaya Foundation, it is bittersweet to share that Christina Butterworth is transitioning from her position as the Yaya Foundation’s Executive Director. Unexpected life events have caused Christina to re-prioritize her current commitments, including her career, and she will be stepping away to focus on her family. I will miss working with Christina and wish her and her family the very best.

During her time with the Yaya Foundation, Christina became an influential, respected, and highly engaged rare disease leader amongst some of the most successful and ambitious patient advocacy groups in the world. I am tremendously grateful to Christina for her many contributions to the 4H Leukodystrophy community and want to take a moment to celebrate some of our most significant accomplishments together, which include:

  • Growing the Foundation’s reach from a few dozen families to 100+ families across the globe with whom we regularly communicate and support via several avenues including our #4HLFamilies calls, often with experts on topics like 4HL research, caregiver wellness, feeding, and other areas of interest.
  • Launching a best-in-class Data Collection Program in which more than 60 individuals from 14 countries have made their patient voices heard – and for which researchers have requested to study the de-identified data as an important pre-clinical milestone.
  • Hosting three impactful conferences:
    Nov 2020 – First 4H Collaborative Research Network working meeting focused on research acceleration through sharing knowledge on existing research projects and identifying important scientific questions to be answered and funded.
    April 2022 – Virtual Care & Disease Management Day allowed families access to clinical care experts and Q&A in both English and live Spanish-translation, the largest gathering of patients and families in the history of our diagnosis.
    June 2022 – 4HL-specific research agenda at the United Leukodystrophy Foundation conference for both in-person and virtual attendees from around the world.
  • Leading and funding a cutting-edge gene therapy proof of concept with one of the world’s 4HL experts and the President of the American Society of Gene and Cell Therapy.
  • Launching a new website with important 4H content for families, clinicians, researchers, and donors while also refreshing and elevating our brand.
  • Hiring an Advancement Advisor to accelerate the Foundation’s sustainability through grants, major donors, family fundraising, and other important development strategies.

Over the coming months, Christina is committed to helping the Foundation identify a successor who can build upon the many successes of her time leading the Yaya Foundation. To learn more about the Executive Director position and search, please view our online brochure or download a copy.

Finally, please join us in wishing Christina well as she transitions over the coming months.


Co-Founder & Board President
Yaya Foundation for 4H Leukodystrophy

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