We’re starting Rare Disease Month with fantastic news! The Chan Zuckerberg Initiative (CZI) awarded The Yaya Foundation for 4H Leukodystrophy an additional $150,000 in capacity-building funds and the critical opportunity to engage with the Rare As One Network for one more year! Thank you CZI for partnering with the 4H community by including us, investing in us, and empowering us to achieve our mission with complete urgency and collaboration.

The Yaya Foundation was welcomed into the first Rare As One cohort in February 2020 and awarded $450,000 to expand organizational capacity and build a collaborative Research Network focused on translation and accelerating the pathway to treatment. In just two years, we’ve grown our staff from volunteer only to a team of two (almost three) dedicated professionals, including a Science Director, Executive Director, and Advancement Advisor. We’ve also grown and continue to power the 4H Collaborative Research Network, or #4HLCN, of scientists and clinicians. In February 2020, this network included __ members. Today, over __ members of the global scientific and medical community are actively engaged as members of the #4HLCN. With the support of CZI and the Rare As One community, we continue to leverage our network’s innovative skills and experience to advance research and accelerate the pathway to treatment for 4H-POLRs-related Leukodystrophy.

Together, we’re closing critical gaps in the understanding of this disease by enrolling families in the Data Collection Program; funding and launching a collaborative natural history study; expanding the research community that studies 4H by hosting international scientific seminars; supporting families with opportunities to hear from the world’s 4H and clinical care experts; and so much more. All of this is powered by a deep integration of voices, stories and experiences from every caregiver and patient. Our community is stronger every day because of you.

With the Yaya Foundation at the center of this network, every scientific endeavor is driven by our urgency to discover treatments and ultimately a cure. Today, our inspiring and engaged patient community includes more than 75 families from more than 13 countries.

It’s impossible to adequately describe the remarkable growth the Yaya Foundation has experienced over the last two years. Rare As One is a one-of-a-kind incubator for rare disease patient organizations. In addition to the critical funding to boost our capacity, our team participates in robust, personalized training covering areas such as building a collaborative research network, strategies for drug repurposing, accounting best practices for nonprofits, hiring and human resources, and sustainable fundraising. Along the way, we’re learning from 49 other patient-led, science-driven organizations in the Rare As One Network. The experience, wisdom and support within this network is beyond measure, and we look forward to our continued collaboration to drive science forward, accelerate discovery and serve the community.

In 2022, we’re eager to solidify all that we’ve been learning over the last two years and launch new initiatives to strengthen our #4HLCN research network and the long-term sustainability of our mission. One day, there won’t be a need for the Yaya Foundation to exist. One day, we’ll have treatments and cures for our friends with 4H leukodystrophy to live long, healthy lives. Until then, we’ll be here working every day to stop the clock, and to change the fate of our community.