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: 

1. ADNP Foundation 
2. Association for Creatine Deficiencies
3. ASXL Rare Research Endowment Foundation 
4. CACNA1A Foundation 
5. CACNA1H Alliance
6. CASK Gene Foundation
7. CHAMP1 Research Foundation
8. CSNK2A1 Foundation
9. CSNK2B Foundation
10. CTNNB1 Connect and Cure
11. CureGRIN Foundation 
12. Cure KCNH1 Foundation
13. Cure Mito Foundation
14. CureSHANK 
15. Cure VCP Disease
16. DLG4 Research Fund
17. DYRK1A Syndrome International Association 
18. FAM177A1 Research Fund
19. FamilieSCN2A Foundation 
20. Foundation for Angelman Syndrome Therapeutics (FAST)
21. Foundation for USP7 Related Diseases 
22. FOXG1 Research Foundation
23. FRAXA Research Foundation 
24. Global Foundation for Peroxisomal Disorders 
25. Glut1 Deficiency Foundation
26. GRIN2B Foundation
27. HOPE For Harvey Foundation
28. IDefine
29. iDREAM For A Cure
30. International SCN8A Alliance
31. Kabuki Syndrome Foundation
32. The KCNC1 Foundation
33. KCNQ2 Cure Alliance
34. KCNT1 Foundation
35. KDVS Foundation
36. KIF1A.ORG
37. Malan Syndrome Foundation
38. MED13L
39. NR2F1 Foundation
40. Ogden CARES
41. PACS1 Syndrome Research Foundation
42. PBD Project
43. Pitt Hopkins Research Foundation
44. P.R.I.S.M.S (Parents and Researchers Interested in Smith-Magenis Syndrome)
45. Project Alive
46. Project 8p
47. Rory Belle Foundation (NARS1)
48. SATB2 Gene Foundation
49. Scarlett’s GABRA1 Village
50. Schinzel-Giedion Syndrome Foundation
51. SETBP1 Society
52. SHANK2 Foundation
53. SHINE Syndrome Foundation
54. Shwachman Diamond Syndrome Alliance
55. SLC6A1 Connect
56. The Stiff Person Syndrome Research Foundation
57. STXBP1 Foundation
58. SynGAP Research Fund (SRF)
59. Tatton Brown Rahman Syndrome Community
60. TESS Research Foundation
61. Yellow Brick Road Project
62. WWOX