Artwork was created during artSpeaks sessions and provided by the William Proudford Sickle Cell Foundation Inc.
Patient artwork may not be used without permission.
The artSPEAKS Program encourages sickle cell kids of all ages and their families to share their creative talents with the world. Participants create powerful and compelling works that express the pain, struggles, triumphs and hopes of living with sickle cell disease and trait. artSPEAKS is a collaboration between the WEPSCF and Art with a Heart. Who can participate in an artSPEAKS session? Children with sickle cell disease or trait Adults with sickle cell disease or trait and their children Family members, especially siblings, are encouraged to participate. Where have artSPEAKS sessions been held? Nemours duPont Hospital for Children, Wilmington, Delaware Johns Hopkins Hospital, Baltimore, Maryland University of Maryland Hospital, Baltimore, Maryland Sinai Hospital, Baltimore, Maryland Georgetown Hospital, Washington, D.C. Children’s National Health System, Washington, D.C. Howard University Hospital, Washington, D.C. Stomp Out Sickle Cell Annual Walkathon, Washington, D.C. |
POETRY
The Sickle Cell Society’s Emmanuel Amuta Poetry Award is for creative young people aged 10-15 years who are living with sickle cell.
https://www.sicklecellsociety.org/poetryaward-2022/
2021 Winners
2020 Winners
https://www.sicklecellsociety.org/childrens-activities/
Patient Narratives
The following patient narratives are made available through the Sickle Cell Information Center. Scinfo.org is a collaboration between members of the Emory Center for Digital Scholarship, the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, the Emory School of Medicine, and the Comprehensive Sickle Cell Center at Grady Health System, Atlanta, Georgia.
For more patient stories from around the globe, visit Not Alone With Sickle Cell and Generation S.
William Bratton Fights Sickle Cell Anemia as He Battles for Playing Time for the Rockets
The Power of Information: A Letter from Michael Cobb
Managing the Pain: Inez C. Hardin
Good Medical Care and Strong Family Support Can Go a Long Way: Letter from Debbie Thomas
The Psychological Impact of Sickle Cell: Fola Ogunnowo
Community Resources
Mission
To gather momentum in the fight against sickle cell disease by fostering connections among community-based organizations in the Northeast region.
Objectives
Support overall SiNERGe project goals of identifying and connecting with providers who serve sickle cell patients in the Northeast region. 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.
Community-Based Organizations (CBOs) in the Northeast
Connecticut
- Citizens for Quality Sickle Cell Care*
Delaware
- Sickle Cell Association of Delaware
District of Columbia
- Faces of Our Children
- Sickle Cell Association of the National Capital Area Inc.
Maryland
- Armstead-Barnhill Foundation for Sickle Cell Anemia
- Sickle Cell Association of Harford and Cecil Counties and the Eastern Shore*
- Christopher Gipson Sickle Cell Moyamoya Foundation
- Maryland Sickle Cell Disease Association*
- William E. Proudford Sickle Cell Fund Inc.
Massachusetts
- Greater Boston Sickle Cell Disease Association*
New Jersey
- Sickle Cell Association of New Jersey*
New York
- 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*
- Westchester Sickle Cell Advocacy Network
Pennsylvania
- Children’s Sickle Cell Foundation Inc.*#
- SCDAA – Philadelphia/Delaware Valley Chapter*#
- South Central Pennsylvania Sickle Cell Council*#
Puerto Rico
- Anemia Falciforme Sickle Cell Disease en Puerto Rico
Virginia
- 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)
EDUCATIONAL RESOURCES
Novartis:
Breaking down barriers for patients with sickle cell disease
https://www.novartis.com/diseases/sickle-cell-disease
Sickle Cell Disease in Africa Fact Sheet Download (PDF 135.08 KB)
WEPSCF Inc:
https://wepsicklecell.org/sickle-cell-disease/
Information Guide: Clinical Studies. Download ( PDF )
