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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

Interactive and informative monthly sessions that connect SiNERGe CBOs and leaders across the region

April 2021

How to Shine the Light on Sickle Cell:  A Movement

Ms. Zemoria Branden

Ms. Donnette Carroll

Co-Chairs, Shine the Light Steering Committee

Dr. Baker discuss the importance of program evaluation and the components needed to ensure the evaluation is timely, relevant, and useful.

Dr. Judith Baker

Director of Policy and Partnerships

Pacific Regional Sickle Cell Collaborative, Center for Inherited Blood Disorders

Ms. Matthews discusses the importance of self-care for CBO leaders as they work to expand and grow their organizations.

Ms. Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Mr. Palau-Tejeda discusses strategies for engaging and energizing advocates working to raise awareness and funds for rare disorders.

Mr. Adrian Palau-Tejeda, Diversity and Inclusion Fellow

EveryLife Foundation for Rare Diseases

Ms. Matthews discusses ways to build a strong, engaged and active Board of Directors.

Ms. Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Ms. Matthews leads a Town Hall discussion about ways to build a portfolio of funding sources that will help improve the sustainability of your organization’s key activities and programming.

Ms. Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Ms. Hughes discusses family engagement as a core value for CBOs and strategies for helping a larger number of families become active participants in the care of their loved one.

Ms. TaLana Hughes, MPH, Executive Director

Sickle Cell Disease Association of 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

THERAPIES CURRENTLY IN PHASE III CLINICAL TRIALS