Yaya Foundation Year End Update and Plans for 2024

Season’s Greetings!

Since I first stepped into this role in March, I have continued to feel that the wind is at our back, and my conviction remains. A celebratory year for the Yaya Foundation – one that sets the tone and tempo as we lay the groundwork for our future. We reflected on its founding, community, bold leadership, innovative research, and growth – evidence of how far we have come!

Although much of my focus continues to be on ensuring a strong finish for 2023, I have begun to consider these priorities for 2024:

  1. Build a 5-year strategic plan.
  2. Expand community engagement opportunities.
  3. Solidify and expand our named family research fund program.
  4. Grant seed funding for an innovative and collaborative global natural history study as a pathway for clinical trail readiness.
  5. Execute successful Scramble and Soiree event.

As we consider the priorities along with all the transformative research projects at hand – gene therapy, biomarkers, natural history, and other potential therapeutic approaches – we will work throughout 2024 to ensure we have the infrastructure and external positioning required to elevate our visibility in the rare disease landscape – moving closer to a world in which there are safe and helpful therapies and cures available for people affected by 4H Leukodystrophy.

Foundation adjustments have been made; as of year-end, Shannon Healey, Director of Institutional Engagement, will no longer be with the foundation. Shannon has been a champion for our community and mission – I wish her well. Shannon will join me for Executive Director hour at 12:00 PM EST, on Monday, December 11. Please join here: https://us02web.zoom.us/j/82213594092

I look forward to all the opportunities to come and know that 2024 will be one of elevation and transformation – we would not be here without you – know that your stories, feedback, requests, and passion guide this work. If you have any questions, please contact me directly at Ben@yayayfoundation4hl.org.

Onward –


As the Yaya Foundation looks to wrap up our end of year $250,000 campaign, many of you have received an email or letter in the mail asking for your consideration of generosity! If you have not had the opportunity to give, please consider a gift today – every dollar counts as we work to achieve each and every goal: Donate – Yaya Foundation (yayafoundation4hl.org). Thank you!

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