help spread the word about sickle cell disease
learn about the impact of sickle cell disease
find out about research for new treatments and a universal cure
To gather momentum in the fight against sickle cell disease by fostering connections among community-based organizations in the Northeast region.
Support overall SiNERGe project goals of identifying and connecting providers with each other and with sickle cell patients in the Northeast region.
Promote ongoing collaboration among community-based organizations (CBOs) in the region.
Provide access to capacity-building expertise and resources for CBOs.
Work in collaboration with other initiatives (e.g. newborn screening grant) in order to provide comprehensive support to patients and providers
Happy Holidays from the SiNERGe CBOs!
Community-Based Organizations (CBOs) in the Northeast
Participation in SiNERGe is open to community-based organizations (CBOs) in the Northeast Region. If you are a CBO (or know of one) in the Northeast, and are not listed below, please contact us!
- Citizens for Quality Sickle Cell Care*
- Sickle Cell Association of Delaware
District of Columbia
- Faces of Our Children
- Sickle Cell Association of the National Capital Area Inc.
- Armstead-Barnhill Foundation for Sickle Cell Anemia
- Association for the Prevention of Sickle Cell Anemia Inc., Harford and Cecil Counties and the Eastern Shore*
- Christopher Gipson Sickle Cell Moyamoya Foundation
- Eastern Shore of Maryland Sickle Cell Association
- Maryland Sickle Cell Disease Association*
- Project Spirit Sickle Cell
- Sally’s Sunshine Foundation
- Sickle Cell Coalition of Maryland
- William E. Proudford Sickle Cell Fund Inc.
- Massachusetts Sickle Cell Disease Association*
- Donna T. Darrien Memorial Foundation for Sickle Cell
- Sickle Cell Association of New Jersey*@
- Candice’s Sickle Cell Fund^
- New York Sickle Cell Advocacy Network (formerly QSCAN)*
- Sickle Cell Advocates of Rochester^
- Sickle Cell Awareness Foundation Corp International
- Sickle Cell Thalassemia Patients Network*@
- Sickle Cell Warriors of Buffalo^
- Westchester Sickle Cell Outreach
- Children’s Sickle Cell Foundation Inc.*#@
- Crescent Foundation@
- SCDAA – Philadelphia/Delaware Valley Chapter*#@
- South Central Pennsylvania Sickle Cell Council*#
- Anemia Falciforme Sickle Cell Disease en Puerto Rico
- Life and Family Foundation Richmond (formerly Living with Sickle Cell RVA)
- Sickle Cell Association Inc.*
*Chapters of the Sickle Cell Disease Association of America (SCDAA)
#Members of the Pennsylvania Sickle Cell Disease Providers Network (PASCDPN)
^Affiliates of Sickle Cell Thalassemia Patients Network (SCTPN)
@HRSA Newborn Screening Grantees
SiNERGe stands for the Sickle Cell Improvement in the Northeast Region through education, a project which is funded by the Health Resources and Services Administration (HRSA). The SiNERGe project is managed by Principal Investigators (PIs) at Johns Hopkins, who work with Site Principal Investigators in thirteen states, the District of Columbia, the U.S. Virgin Islands and Puerto Rico, to improve access to high quality care for sickle cell patients.
Visit the Johns Hopkins site for information about the Principal Investigators and Site Principal Investigators for SiNERGe.
There are four regions in the United States with similar projects. Each region has its own principal investigators, objectives and goals.
SiNERGe is a U.S.-based initiative that includes thirteen states, the District of Columbia, the U.S. Virgin Islands, and Puerto Rico:
- District of Columbia
- New Hampshire
- New Jersey
- New York
- Puerto Rico
- Rhode Island
- U.S. Virgin Islands
- West Virginia
Just as the PIs and Site PIs are working together to improve care in the Northeast region, the SiNERGe CBOs are working collaboratively with each other and with the PIs in order to improve their capacity for serving the sickle cell community. CBOs are engaged in a range of activities, including advocacy, fundraising, education, direct services, and outreach. Through SiNERGe CBO, they share best practices across the region.
The William E. Proudford Sickle Cell Fund (WEPSCF) has been designated as the Lead CBO for SiNERGe. WEPSCF has responsibility for the overall management of the SiNERGe CBO Collaborative. WEPSCF works in conjunction with the SiNERGe CBO Leadership Team to guide and coordinate SiNERGe CBO activities.
The SiNERGe CBO Leadership Team is comprised of the WEPSCF (Lead CBO) and CBO leaders who act as project and process leaders for the collaborative. Current members of the Leadership Team are:
- SCDAA-Philadelphia/Delaware Valley Chapter (PA) – Shine the Light
- Shine the Light is a day of community action celebrated each year on June 19, World Sickle Cell Day, during which individuals and organizations organize activities to highlight sickle cell efforts in their local communities
- Sickle Cell Thalassemia Patients Network (NY) – CBO Project ECHO
- CBO Project ECHO is a peer-to-peer learning platform developed at the University of New Mexico which the SiNERGe CBOs utilize in order to share best and promising practices for improving organizational capacity and access to care for sickle cell warriors and their families.
- Sickle Cell Association of New Jersey (NJ) – Unaffiliated Patients
- The Unaffiliated Patients Committee aims to identify effective processes for locating and engaging warriors who have not been seen by a hematologist and/or connected with a CBO for a year or longer.
- SCDAA – Philadelphia/Delaware Valley Chapter (PA) and Project Spirit Sickle Cell (MD) – Onboarding and Engagement
- The Onboarding and Engagement Committee welcomes new CBOs to the Collaborative, and provides orientation, training, mentoring and coaching to help CBOs fully engage in SiNERGe CBO activities.
- Children’s Sickle Cell Foundation (PA) – Data Collection
- The Data Collection Committee establishes guidelines and processes for compiling and disseminating data related to SiNERGe CBO activities.
SiNERGe aims to work collaboratively with other state-wide and/or regional initiatives in order to better serve the sickle cell community. For example, SiNERGe focuses on providers, while the Newborn Screening Grant focuses on patients. Working in collaboration, the two initiatives can more effectively serve all stakeholders needed to ensure that patients have access to high-quality care throughout the Northeast region.
Contact our office to join SiNERGe CBO. We welcome any CBO serving the sickle community in the Northeast region. There is no fee associated with participating in SiNERGe CBO.
For the Principal Investigators (Physicians, Researchers):
Ms. Sharon Moyo-Songonuga, SiNERGe Senior Research Coordinator
601 N. Caroline Street, 7150A
Baltimore, MD 21287
For Community-Based Organizations:
Ms. Karen Byer, SiNERGe CBO Administrative Support
William E. Proudford Sickle Cell Fund Inc.
PO Box 42411
Baltimore, MD 21284