About ReNU2 Foundation
Fueled by hope. United by purpose. Committed to a treatment.
ReNU2 Foundation is a parent-led organization serving a growing community of families around the world. We foster collaboration, support families, raise awareness, and advance research into ReNU2.
Our mission
Unite families. Raise awareness. Advance research.
We connect families, reach clinicians and geneticists, advocate for access to whole genome sequencing, and bring researchers together to move the field toward treatment.
Our vision
Testing, care, and community for every family.
A world where every family touched by ReNU2 has access to appropriate testing, informed medical care, and a community that surrounds them with resources and hope, while we relentlessly pursue the treatments that will change their lives.
Board of Directors
Our board is responsible for ReNU2 Foundation's direction, financial oversight, and accountability to the families we serve.
Laura Wilson
Founder & President
Laura Wilson is the founder of ReNU2 Foundation and is based in Massachusetts. She came to this work not as a scientist or physician, but as a parent who spent years navigating a medical system that was not built for children like her daughter, Ellia. After Ellia was diagnosed in April 2025 with a pathogenic variant in RNU2-2, Laura set out to build the resource and community her family had needed. She leads renu2.org, a resource for families and clinicians learning about this newly recognized disorder. Laura is trained as a marriage and family therapist.
Jessica Adams, CPA
Treasurer
Jessica Adams is a Certified Public Accountant with more than a decade of experience in financial leadership, reporting, and internal controls. As Controller at Easton Select Group in West Bridgewater, MA, she has built financial processes and controls from the ground up to support growth, audit readiness, and strong governance. Jessica began her career in audit at PricewaterhouseCoopers (PwC) and later served as Accounting Manager at the National Brain Tumor Society. She also runs a small tax practice that includes support for nonprofit organizations.
Effie Sandblom
Clerk/Secretary
Effie Sandblom is a digital health consultant and principal of Effie Sandblom LLC, with more than 20 years of experience in healthcare technology, quality assurance, regulatory compliance, and data privacy. She has held leadership roles at embecta, BD, Docent Health, and Humana, with a focus on diabetes care and patient-centered digital health. Effie brings expertise in AI governance, privacy compliance, and program management to ReNU2 Foundation's digital infrastructure and research partnerships.
What we stand for
Hope
We believe a treatment is possible, and that belief drives our work.
Community
No caregiver should face this journey alone.
Collaboration
Families, researchers, and clinicians move faster together.
Innovation
We champion bold science and creative thinking.
Impact
We measure our work by how it improves families' lives.
Urgency
Families cannot wait, so we act with purpose and speed.
Compassion
We lead with empathy in every interaction.
The path to change
Now, 1 to 2 years
Finding each other
More families connected and diagnosed, more clinicians aware, and research guided by registry data.
3 to 5 years
Building the standard of care
ReNU2 recognized as a defined condition, with care standards and routine whole genome sequencing.
5 to 10 years
A treatment exists
A treatment that reduces seizures or halts disease progression is available.
Our North Star
A child born with ReNU2 ten to fifteen years from now is diagnosed at birth or shortly after: before the hardest years, before the seizures go unrecognized, before families spend years in the dark. Their medical team knows what they're dealing with. Their family finds community immediately. And a treatment is available that changes the course of what this disorder can do.
That is what we are building toward. Every family connected, every researcher convened, every dollar raised is a step on that path.
Governance
ReNU2 Foundation operates under fiscal sponsorship through The Rare Village Foundation while we complete the process of becoming an independent 501(c)(3) nonprofit. Our board has adopted bylaws and a Conflict of Interest Policy.
Join us
We are growing our board and welcome people with fundraising and development experience. To learn more, email info@renu2.org.