Sickle Cell Disease Association of America, Inc.

Break The Sickle Cycle

aka SCDAA, Inc.   |   Baltimore, MD   |  www.sicklecelldisease.org

Mission

To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Ruling year info

1972

President & Chief Executive Officer

Ms. Beverley Francis-Gibson

Main address

3700 Koppers St Ste 570

Baltimore, MD 21227 USA

Show more contact info

EIN

23-7175985

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The Sickle Cell Disease Association of America, Inc. (SCDAA) is working to address the need for education, awareness, empathy to support individuals, families and communities affected by Sickle Cell Disease.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Education and Advocacy

SCDAA's national programs include the production and distribution of educational materials, awarding of post-doctoral research fellowships, academic scholarships for sickle cell patients, patient advocacy programs and technical training and assistance through national, regional and local conferences. Our Member organizations provide a variety of patient support services including summer camps, counseling, home care and tutoring in over 300 communities nationwide and in Canada.

Population(s) Served

SCDAA serves as the National Backbone Organization for U.S. Health Research Services Administration (HRSA), working with community-based organizations (CBOs) across the country to implement a strengthened approach to access quality care, quality care improvement and strategic activities within the sickle cell community.

This national initiative provides the unique opportunity for SCDAA to enhance its activities by achieving the following key objectives:

Identify and support CBOs with the capacity to identify, educate and link patients to care in up to 17 states across the United States

Work with state CBO partners to provide care coordination, medical home assistance, education and other services to at least 15,000 non-active patients

Recruit, train and retain at least 150 Community Health Workers (CHWs) via a proprietary curriculum developed by SCDAA

Provide technical assistance to CBOs to conduct outreach to individuals with SCD

Develop partnerships with providers and share resources to promote individuals and families as partners in care

Develop, disseminate and ensure application of core competencies for CHWs in SCD

Establish and maintain a publicly available online repository of sickle cell-related evidence based materials, articles and other resources for use by children and adults with SCD, families and the SCD community

Develop partnerships with stakeholders from the public and private sectors to address emerging issues related to sickle cell disease and sickle cell trait

Population(s) Served

The SCDAA Community Health Worker (CHW) Certification Program covers the core competencies of community health workers, and includes additional concentration on sickle cell disease. Live lectures, in-class assignments and homework provide a wide array of learning opportunities.

Interactive Webinar

Classes are taught using a live interactive webinar format. Instructors are national leaders in their respective fields. The interactive format allows students to learn from industry leaders without having to travel. We utilize a user-friendly webinar software to ensure the class is accessible for all levels of technological expertise.

Field Experience

A valuable part of the CHW certification program is obtained through the hands on field work experience provided by our partner community based organizations within your local area. Preceptorships require 40 hours of clinic, community and field experience.

Exam

The National Community Health Worker Certification exam assesses student knowledge and skills obtained during program training. Analysis of student learning includes evaluating the knowledge, skills, and abilities that will be utilized in both the community and medical settings such as: learning duties of a CHW, providing patient intake services, presentation and communication skills, linking resources, building community relationships and more.

Population(s) Served

The SCDAA Leadership Academy helps to increase the productivity of those sickle cell disease professionals that work to assist their organizations in achieving long-term goals. It helps to develop and improve the organizational culture and fosters a more effective learning culture within an organization.

Building leadership skills and organizational effectiveness is paramount to the success of sickle cell programs across the nation. That is why SCDAA offers an array of training programs to the public in an effort to improve quality of work, programs and services.

SCDAA’s Leadership Academy trainings cover such topics as, but not limited to::

Member Capacity Building
Nonprofit Governance
Advocacy
Funding Sustainability
Leadership Development

Population(s) Served

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. This will be accomplished by achieving the following goals:

I. Advocacy

• Support passage of the Sickle Cell Disease Drug Treatment Act.
• Increase engagement with the U. S. Department of Health and

Human Services

• Make an appropriations request with the Agency For Healthcare Research and Quality (AHRQ) to quantify social/economic statistics for sickle cell patients to conduct research and gather data to help improve quality of life.

II. Empower SCDAA Chapter Community Based Organizations

• Focus on best practices regarding direct services, advocacy and family support services.
• Drive funding through federal, state and corporate grant making efforts.
• Identify new and innovative programs and workshops offered at SCDAA national conventions.
• Identify and help develop more strategic community based organizations to become part of SCDAA.

III. Improve Quality of Life

• Improve Family and Health Education for persons affected by sickle cell disease.
• Improve and increase access to quality health care
• Improve provider education to better serve and support patients and families affected by sickle cell disease.

IV. Advancing a Universal Cure

• Develop campaigns to increase awareness about need for universal cure.
• Increase funding through web-base and letter writing campaign.
• Fund “SCDAA Reach for the Cure" Investigator
Encourage participation in curative RX trials through media campaign and SCDAA clinical trial navigator

The SCDAA Board of Directors in conjunction with the National Staff, member community based organizations and stakeholders will engage in continuous efforts to execute a proactive strategic plan that will focus on the following:

1.) Board Excellence
2.) Advocacy
3.) Fund Development
4.) Member Community Based Organization technical support and capacity building
5.) Effective Communications and Marketing
6.) Staff Development
7.) Support of legislation and research to find a universal cure for sickle cell disease for pediatric as well as adult populations.

The SCDAA Board of Directors is presently engaging in ongoing training and development activity via annual retreats, board meetings and active Board committee assignments. In addition, the Board of Directors, in partnership with the President/CEO, continue to assess the organization's business model and infrastructure to ensure that the SCDAA mission is achieved and overall organizational goals and objectives will be met.

1) SCDAA achieved a deficiency free A-133 audit with no material weaknesses cited for FY 2016.

2) SCDAA successfully recruited and elected 6 new board members during FY 17.

3) The SCDAA National Office was awarded the continuation of the Sickle Cell Disease Newborn Screening Grant via the U.S. Department of Health Resources and Services Administration (HRSA) which included a review score of 98 out of 100 points.

4) The SCDAA Board of Directors has successfully partnered credible support organizations such as Maryland Nonprofits Inc. to engage in board training and related development initiatives to promote and sustain board excellence and leadership.

5) In 2018, The SCDAA Board of Directors successfully convened a Board Retreat to identify strategic goals for the organization, re-visit the organization's vision and mission and create action plans for Board Committee development, review and execution.

6) In 2018, The SCDAA Board of Directors was successful in recruiting and hiring a high quality President/Chief Executive Officer with extensive experience in non-profit management, fundraising and development expertise.

Financials

Sickle Cell Disease Association of America, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Sickle Cell Disease Association of America, Inc.

Board of directors
as of 10/3/2018
SOURCE: Self-reported by organization
Board co-chair

Dr. David Braxton


Board co-chair

Mr. Dennis Taylor

Christopher Hollins

Dr. Biree Andemariam

Dr. Kim Smith-Whitley

Dr. Wanda Whitten-Shurney

Dr. Lewis Hsu

Dr. Genice Nelson

Dr. Gwendolyn Poles

Crystal Riley

JaKela Parker

Ed Flowers

Dr. Gladys Robinson

Lise Hall

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes