Chan Zuckerberg Initiative funds COMBINEDBrain to fast track research for rare neurological disorders

COMBINEDBrain’s Founder and Director, Dr. Terry Jo Bichell, understands the power of collaboration. In her years as a neuroscientist, advocate, and rare patient parent, she has witnessed the field of neurodevelopment transform from a broad focus on autism  or intellectual disability,  to an era based on rare genetic  disorders.  When new disorders are identified, Patient Advocacy Organizations spring up, led by passionate parents with the drive and determination to cure their children. Some of these organizations represent as many as 10,000 patients, some as few as 10.  No matter their size, each organization must follow a similar path to a cure; a path which includes 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 are busy caring for their children with complex medical needs while they fight the clock to cure them. Dr. Bichell formed COMBINEDBrain to help these non-profit organizations, envisioning it as a pre-competitive alliance between advocacy foundations, researchers, clinicians, and industry to fast-track the process for all stakeholders. 

 

COMBINEDBrain provides the organizational structure for patients, academia and industry to come together to develop treatments for those suffering from 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 started with 20 original advocacy groups in 2019 has now grown to over 64.  Like all small nonprofits, finding a steady  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 not to compete with the advocacy groups that COMBINEDBrain serves, the foundation does not solicit donations from individuals, relying 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 additional post-doctoral scientist, and more administrative help. This new staff is making it possible for us to launch new biomarker projects and invite more patient advocacy groups into the fold. CZI is helping 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 help solve some of society’s toughest challenges — from eradicating disease and improving education, to addressing the needs of our local communities. Their mission is to build a more inclusive, just, and healthy future for everyone. 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 vast majority are not well understood, and less 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 in their quest for cures.  It seemed that the two organizations have the same mission- pooling resources and uniting communities. 

 

"We are excited to support COMBINEDBrain in its collaborative, patient-driven efforts to accelerate the path to clinical treatments for people 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: 

ADNP Foundation  Association for Creatine Deficiencies ASXL Rare Research Endowment Foundation  CACNA1A Foundation  CACNA1H Alliance CASK Gene Foundation CHAMP1 Research Foundation CSNK2A1 Foundation CSNK2B Foundation CTNNB1 Connect and Cure CureGRIN Foundation  Cure KCNH1 Foundation Cure Mito Foundation CureSHANK  Cure VCP Disease DLG4 Research Fund DYRK1A Syndrome International Association  FAM177A1 Research Fund FamilieSCN2A Foundation  Foundation for Angelman Syndrome Therapeutics (FAST) Foundation for USP7 Related Diseases  FOXG1 Research Foundation FRAXA Research Foundation  Global Foundation for Peroxisomal Disorders  Glut1 Deficiency Foundation GRIN2B Foundation HOPE For Harvey Foundation IDefine iDREAM For A Cure International SCN8A Alliance Kabuki Syndrome Foundation The KCNC1 Foundation KCNQ2 Cure Alliance KCNT1 Foundation KDVS Foundation KIF1A.ORG Malan Syndrome Foundation MED13L NR2F1 Foundation Ogden CARES PACS1 Syndrome Research Foundation PBD Project Pitt Hopkins Research Foundation P.R.I.S.M.S (Parents and Researchers Interested in Smith-Magenis Syndrome) Project Alive Project 8p Rory Belle Foundation (NARS1) SATB2 Gene Foundation Scarlett’s GABRA1 Village Schinzel-Giedion Syndrome Foundation SETBP1 Society SHANK2 Foundation SHINE Syndrome Foundation Shwachman Diamond Syndrome Alliance SLC6A1 Connect The Stiff Person Syndrome Research Foundation STXBP1 Foundation SynGAP Research Fund (SRF) Tatton Brown Rahman Syndrome Community TESS Research Foundation Yellow Brick Road Project WWOX END