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Awareness

help spread the word about sickle cell disease

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Education

learn about the impact of sickle cell disease

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Hope

find out about research for new treatments and a universal cure

Working toward longer, healthier lives for individuals with sickle cell disease.

blood cells

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

COVID-19 Precautions

Wash hands often.  Maintain social distance. Contact your health provider or health department with questions.

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!

Connecticut

  • Citizens for Quality Sickle Cell Care*

Delaware

  • William E. Proudford Sickle Cell Fund Inc.

District of Columbia

  • Faces of Our Children
  • Sickle Cell Association of the National Capital Area Inc.

Maryland

  • Armstead-Barnhill Foundation for Sickle Cell Anemia
  • Association for the Prevention of Sickle Cell Anemia Harford and Cecil Counties Inc.*
  • 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
  • Queens Sickle Cell Advocacy Network*
  • Sickle Cell Awareness Foundation Corp International
  • Sickle Cell Thalassemia Patients 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

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)

FAQ about SiNERGe

Learn more about who we are and what we’re doing to gain momentum in the fight against sickle cell disease.

SiNERGe stands for the Sickle Cell Improvement in the Northeast region through education. 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 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:

  • Connecticut
  • Delaware
  • District of Columbia
  • Maine
  • Maryland
  • Massachusetts
  • New Hampshire
  • New Jersey
  • New York
  • Pennsylvania
  • Puerto Rico
  • Rhode Island
  • U.S. Virgin Islands
  • Vermont
  • Virginia
  • West Virginia

Just as the PIs and Site PIs are working together to improve care in the Northeast region, the 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, they share best practices across the region.

The William E. Proudford Sickle Cell Fund has been designated as the Lead CBO Coordinator. WEPSCF has responsibility for coordinating the activities of CBOs throughout the northeast region.

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. We welcome any CBO serving the sickle community in the Northeast region. There is no fee associated with participating in SiNERGe.

For the Principal Investigators (Physicians, Researchers):

Ms. Bailey House, SiNERGe Regional Collaborative Coordinator
Johns Hopkins
601 N. Caroline Street, 7150A
Baltimore, MD 21287
443.287.0608
bailey.house@jhmi.edu

Ms. Nikia Vaughan, SiNERGe ECHO Coordinator
Johns Hopkins
601 N. Caroline Street, 7150A
Baltimore, MD 21287
443.287.7632
nvaughn2@jhmi.edu

For Community-Based Organizations:

Ms. Shelley Drasal, SiNERGe CBO Administrative Support
William E. Proudford Sickle Cell Fund Inc.
PO Box 42411
Baltimore, MD 21284
888.893.6735
shelley@wepsicklecell.org

The SiNERGe Northeast Regional Sickle Cell Collaborative presents
ECHO 2.0

Interactive and informative monthly sessions that connect sickle cell leaders across the region

October 2020

Promising Practices in Family Engagement

TaLana Hughes, MPH

Executive Director

Sickle Cell Disease Association of Illinois
Chicago, Illinois

 

Ms. Brown discusses how and when to launch a state-level legislative agenda with an emphasis on building a broad base of stakeholder support for sickle cell initiatives.

Ms. Mary Brown, Executive Director

Sickle Cell Disease Foundation of California

Dr. Turchi discusses the “medical home” as a patient-centered approach to managing SCD and helps CBO leaders understand how they can assist families in understanding how the medical home improves access to quality care.

Dr. Renee Turchi, Director

PA Medical Home Initiative & Division Chief of General Pediatrics, St. Christopher’s Hospital

Ms. Matthews discusses the importance of connecting with like-minded leaders in order share promising ideas and practices that can improve the organization’s capacity for serving patients and families.

Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Ms. Matthews discusses the unique challenges CBOs are facing during the COVID-19 pandemic and Black Lives Matter movement.

Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Ms. Ross discusses new therapies available for families and ways that CBOs can help families work with providers to decide the best treatment option.

Diana Ross, MSN, RN, Research Coordinator

Emory University

Dr. Crosby discusses ways to help individuals and families cope during the COVID-19 pandemic.

Lori E. Crosby, PsyD. Professor of Pediatrics

Cincinnati Children’s Hospital Medical Center

Dr. Whitten-Shurney discusses promising practices for supporting students, including the requirements for a “504 Plan” and an “IEP.”

Wanda Whitten-Shurney, MD, CEO and Medical Director

Sickle Cell Disease Association of America, Michigan Chapter

ECHO 2.0 is supported by HRSA. The views expressed are those of the speaker(s) and participants and do not represent official views of, nor an endorsement by HRSA, Johns Hopkins or the WEPSCF. ECHO 2.0 is presented for information purposes only. Individuals should seek advice, guidance and direction from their qualified health care provider.

INDIVIDUALS LIVING WITH SCD IN THE U.S.

HOSPITALIZATIONS ANNUALLY DUE TO SCD IN THE U.S.

NEW DRUGS APPROVED BY FDA SINCE 2017

NEW DRUGS CURRENTLY IN PHASE III CLINICAL TRIALS