Patient Support Committee
Goals for 2017-2018
The BOS Patient Support Committee will assemble and distribute welcome packages to newly diagnosed BOS families on an ongoing basis as informed by parents or guardians over the next year for the purpose of enhancing a sense of community and support.
The BOS Patient Support Committee will assemble and distribute birthday club gifts to diagnosed BOS patients on an ongoing basis as informed by parents or guardians over the next year for the purpose of enhancing a sense of community and support.
The BOS Patient Support Committee will distribute sympathy gifts to BOS families who have lost a child/relative on an ongoing basis as informed by parents or guardians over the next year for the purpose of providing grief support to these families.
The BOS Patient Support Committee will help coordinate and plan an annual Family Meet-Up Event for the BOS Community at various locations across the United States for the purpose of enhancing a sense of community and celebrating BOS children/adults worldwide.
Being a parent of a special needs child can be overwhelming. We want to give parents the tools to be the best caretaker to their child and themselves. Our patient support committee will connect you with families who share your same experience and feelings.
Jesa Galloway, Patient Support Committee Chair
jesa@bos-foundation.org
Receiving a diagnosis of BOS can be very difficult. We have found that the best source of information is other parents. The Parent Support Group is a great way to exchange information with other families. Another way to connect with families is to attend our annual BOS Meet-Up.
The BOS Connection group was created for knowledge, collaboration, medical research, and public awareness of Bohring-Opitz Syndrome. This group shares various information about the BOS Foundation and how you can share your story and photos on our social media sites.