Research & Medical Advisory Board

The Medical Advisory Board was established to support the foundation and its patients and families.  It serves as a liaison between the BOS Foundation and the medical community.  The role of the board is primarily advisory, however, they may engage in other activities that promote awareness and advocacy on behalf of the Foundation and the community it supports. 

The Medical Advisory Board does not make decisions for the BOS Foundation, however their recommendations, especially those medical in nature, are highly valued.

Members of the Research & Medical Advisory Board serve a two-year term that maybe extended up to six consecutive years. 

Carrie Hunsucker(carrie@bos-foundation.org), Research & Medical Advisory Board

The BOS Patient Registry is a critical tool to collecting medical data and supporting future research activities.  We welcome all BOS families to participate, including our BOS Angels.  Your participation helps patients with BOS and ASXL mutations get better care by collecting important information that the medical community needs. A well run registry also helps produce scientific literature and leads to new research findings. 

Please contact us with questions and to enroll in this study: Dr. Bianca Russell (Cincinnati): Bianca.Russell@cchmc.org or Dr. Wen-Hann Tan (Boston): Wen-Hann.Tan@childrens.harvard.edu.