COMBINEDBrain receives grant from the Chan Zuckerberg Initiative to accelerate 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


The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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