COMBINEDBrain receives grant from the Chan Zuckerberg Initiative to speed up research for rare neurological disorders

COMBINEDBrain’s Founder and Director, Dr. Terry Jo Bichell, understands the facility of collaboration. In her years as a neuroscientist, advocate, and rare patient parent, she has witnessed the sphere of neurodevelopment transform from a broad deal with autism or mental disability, to an era based on rare genetic disorders. When latest disorders are identified, Patient Advocacy Organizations spring up, led by passionate parents with the drive and determination to cure their children. A few of these organizations represent as many as 10,000 patients, some as few as 10. Regardless of their size, each organization must follow an analogous path to a cure; a path which incorporates diagnosing patients, running natural history studies, identifying non-human models, and conducting disease burden studies. This path is long and arduous, especially for families who’re busy caring for his or her children with complex medical needs while they fight the clock to cure them. Dr. Bichell formed COMBINEDBrain to assist these non-profit organizations, envisioning it as a pre-competitive alliance between advocacy foundations, researchers, clinicians, and industry to fast-track the method for all stakeholders.

COMBINEDBrain provides the organizational structure for patients, academia and industry to return together to develop treatments for those affected by rare genetic neurodevelopmental disorders. Industry brings a deep expertise, dedicated work force and funding to power the flywheel of innovation, while clinicians and scientists bring basic knowledge, and patients contribute lived experience. What began with 20 original advocacy groups in 2019 has now grown to over 64. Like all small nonprofits, finding a gentle source of funding for operating expenses has been a struggle. COMBINEDBrain launched with a donation from the Bichell Family and has since received several grants. Determined to not compete with the advocacy groups that COMBINEDBrain serves, the inspiration doesn’t solicit donations from individuals, counting on membership dues, income from projects, and grants.

Late in 2022, The COMBINEDBrain team received a grant from the Chan Zuckerberg Initiative.

This grant was a godsend. These funds enabled us to strengthen our core operations by hiring an accountant, an extra post-doctoral scientist, and more administrative help. This latest staff is making it possible for us to launch latest biomarker projects and invite more patient advocacy groups into the fold. CZI helps patients help themselves by strengthening organizations like ours to do rigorous meaningful work towards curing rare diseases.”

Dr. Terry Jo Bichell, COMBINEDBrain Founder and Executive Director

The Chan Zuckerberg Initiative was founded in 2015 to assist solve a few of society’s hardest challenges -; from eradicating disease and improving education, to addressing the needs of our local communities. Their mission is to construct a more inclusive, just, and healthy future for everybody. A part of the Chan Zuckerberg Initiative is the Rare As One Project. Rare As One recognizes that “rare” is anything but rare. As many as 10,000 rare diseases affect 300 million people globally. The overwhelming majority aren’t well understood, and lower than 5 percent have approved treatments. Yet worldwide, patients are meeting these challenges head-on. The Rare As One Project is committed to uniting these communities of their quest for cures. It seemed that the 2 organizations have the identical mission- pooling resources and uniting communities.

“We’re excited to support COMBINEDBrain in its collaborative, patient-driven efforts to speed up the trail to clinical treatments for individuals with rare neurodevelopmental disorders by pooling efforts, studies and data.” – Heidi Bjornson-Pennell, Rare As One Senior Program Manager

COMBINEDBrain is proud to be supported by CZI’s Rare As One Project.

Patient Advocacy Members of COMBINEDBrain:

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COMBINEDBrain receives grant from the Chan Zuckerberg Initiative to speed up research for rare neurological disorders

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