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

December 2021

Looking for Novel Ways to Support Families During the Holidays

Michael Matthews

Executive Director

Children’s Sickle Cell Foundation

 

Dr. Crosby shares information about the pandemic, its effect on children, and implications for helping families navigate through an unpredictable school year.

Lori E. Crosby, PsyD

Clinical Psychologist, Cincinnati Children’s

This session focuses on understanding the funding, networking and research opportunities offered through the Patient-Centered Outcomes Research Institute.

Mary Bentley LaMar

Founder and Executive Director, Sickle Cell Association of New Jersey

This session focuses on how to help families discuss and prepare for end-of-life and estate planning – two difficult but important topics.

The host for this session is Ms. Ginger Davis, Director of Media and Education, Sickle Cell Thalassemia Patients Network

Ms. Matthews reviews the ECHO model, topics discussed during the last year, and potential topics for the 2021-2022 year.

Ms. Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Ms. Matthews presents several models for helping patients successfully navigate the transition from pediatric to adult care.

Ms. Andrea Matthews, Founder

Children’s Sickle Cell Foundation

Mr. Goodwin discusses ways in which community-based organizations can build partnerships with like-minded organizations within their state in order to advance shared goals and objectives.

Mr. Mark Goodwin, Project Director

Sickle Cell Thalassemia Patients Network

The host for this session is Ms. Ginger Davis, Director of Media and Education, Sickle Cell Thalassemia Patients Network

Ms. Lewis outlines the goals, objectives, and components of an effective Community Health Worker Program.

Ms. Sabrina Lewis, CHW, Ambassador of Wellness

Sickle Cell Thalassemia Patients Network

The host for this session is Ms. Sarai Santiago, Outreach/Community Health Worker, Sickle Cell Thalassemia Patients Network

Ms. Brandon and Ms. Carroll, joined by the Shine the Light team, discuss ways to engage the community in this year’s June 19 Shine the Light on Sickle Cell campaign.

Ms. Zemoria Brandon and Ms. Donnette Carroll, Co-Chairs

Shine the Light on Sickle Cell Steering Committee

SiNERGe CBO

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

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