BREAKING THE SICKLE CYCLE: DO YOU HAVE WHAT IT TAKES?
FIRST ANNUAL MINNESOTA SICKLE CELL DISEASE CONFERENCE
September 15, 2007
BREAKING THE SICKLE CYCLE:
DO YOU HAVE WHAT IT TAKES?
In Minnesota, an estimated 500-600 people live with sickle cell disease and an additional 15-20 babies are born with sickle cell disease each year. There are currently no community-based initiatives that focus on providing education, support and resources for people and the families affected by sickle cell disease in Minnesota. The First Annual Sickle Cell Disease Conference will fulfill this need.
Idea
September is Sickle Cell Awareness Month, and the perfect time to kick-off a new community education initiative about sickle cell disease. The First Annual Sickle Cell Disease Conference will be a statewide sickle cell education meeting designed to bring together more than 200 members of the medical and lay communities to address the issues of sickle cell disease and sickle cell trait in Minnesota. This event will focus on educating families and individuals affected by the trait and/or disease, raising public awareness of the prevalence of sickle cell trait and disease in the African-American community and discussing issues related to expanding access to resources for individuals and medical personnel in and around Minnesota. Ultimately this conference hopes to affect improved care for sickle cell disease patients and to limit/reduce the genetic propagation of sickle cell disease in the community.
Activities
This will be a one-day conference on September 15, 2007. Activities will include invited speakers from around the world and the country who are notable authorities on the management of sickle cell disease.
Speakers include: Dr. Adebayo Olujohungbe, from the United Kingdom, a doctor living with sickle cell disease who has dedicated his life to the treatment and management of hemoglobinopathies and hematological disorders. Dr. Adebayo Olujohungbe is world renowned for his expertise on the management of sickle cell disease.
Dr. Robert P. Hebbel who holds the George Clark Professorship in the Department of Medicine will be invited to review his outstanding research on the vascular pathobiology of sickle cell disease; research that is being done at the University of Minnesota, Minneapolis, MN. His work has been instrumental in reappraising the pathophysiology of sickle cell crises and its treatment options.
Drs. Stephen Nelson (Children?s Hospitals and Clinics of Minnesota) and M. Obinna Nwaneri (Abbott Northwestern Hospital, Minneapolis) will discuss the formulation and implementation of the currently available Minnesota sickle cell disease emergency treatment guidelines.
Dr. Jed Gorlin, Medical Director of Memorial Blood Centers, will discuss the need for African and African-American blood donors to help sickle cell disease patients receiving transfusions. There will also be a blood drive at the conference which will include sickle cell trait testing.
The Rev. Denise Dunbar-Perkins, Chaplain-Abbott Northwestern Hospital, and Christine L. Jones, Sickle Cell Disease Social Worker (Minnesota Department of Health) will review the on-going initiative with a view to exploring psychosocial/spiritual support of sickle cell disease patients seen at the hospital; and in turn reducing the frequency of admissions for sickle cell disease. As well as the importance of long-term follow-up for patients and families affected by the disease.
Workshops on sickle cell disease management will be provided including educational presentations about sickle cell disease from both psychosocial and medical perspectives. There will also be a sickle cell trait testing available for those who wish to be tested. The involvement of families and patients living with the disease will also be crucial to putting a face on, and add a voice to the disease condition in our state.
Educational materials for the event will consist of pamphlets and fact sheets on sickle cell disease, as well as materials specific to each attending group, i.e. sickle cell disease patients, the medical community, family members of people living with sickle cell disease, individuals who have the trait and other interested members of the community.
The goal of this event is to educate and raise community awareness of sickle cell disease and sickle cell trait in the state of Minnesota. It aims to bridge the gap between health care providers, families, friends and those living with sickle cell disease. There is very little awareness of this disease and its devastating effects on our community.
Evaluation
Each attendee will receive a participant satisfaction survey at the end of the conference. These evaluations will gauge the effectiveness of the event and determine how to refine, improve or expand the current program. The results will be available to persons of interest within the community. Additional funds will be sought through grants, individual contributions and volunteers.