SILVER2022

TRISOMY 18 SUPPORT INC

Advancing Research. Empowering Families.

aka Trisomy 18 Foundation   |   Flushing, MI   |  http://www.trisomy18.org

Mission

Trisomy 18 Foundation . . . Accelerating Research. Empowering Families.

The mission of the Trisomy 18 Foundation is to improve the health outcomes of families who receive a Trisomy 18 diagnosis for their child through national leadership in accelerating progress in biomedical research, patient education, family support, and advocacy. All these efforts are devoted to making Trisomy 18 a preventable and treatable conditions for future generations so that fewer families lose their precious newborns to this tragic condition.

Ruling year info

2004

Executive Director

Kristine Shaughnessy

Main address

PO Box 320

Flushing, MI 48433 USA

Show more contact info

Formerly known as

Trisomy 18 Support Foundation

EIN

77-0600393

NTEE code info

Birth Defects (G20)

Specifically Named Diseases Research (H80)

Private Grantmaking Foundations (T20)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction. When this happens, instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States and 1 in 6000 live births. The numbers of total births is much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy. Our work at the Foundation is to improve health outcomes for diagnosed children and to reduce the prevalence rate of Trisomy 18 by accelerating research into the causes of Trisomy 18 so that less families lose their precious children to this condition.

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?

Patient Education and Support

Education and Support Programs: Trisomy 18 Foundation's nationally-recognized program supports and educates expectant parents, caregivers and medical providers who treat families diagnosed with a Trisomy 18 pregnancy through direct service calls from program staff, workshops, public presentations, distribution of educational materials and by providing online peer support programs.

Population(s) Served
Adults
Caregivers

The Research Advocacy and Public Engagement Program: This Program supports constituent and stakeholder engagement in basic and clinical research and health policy making at the federal and state levels on regulatory initiatives that impact the lives of families and their children living with Trisomy 18.

Population(s) Served
Adults
Caregivers

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.

The goal of the Trisomy 18 Foundation is to make Trisomy 18 a preventable and treatable condition and to ensure that all families have access to compassionate and knowledgeable care that respects the humanity and potential of their child diagnosed with Trisomy 18.

Trisomy 18 Foundation works to accomplish it's goal by:
• educating families, their communities and health professionals about Trisomy 18 and related conditions
• creating a caring worldwide community of affected families maximizing digital strategies to bridge distances
• driving research initiatives and research funding to focus on prevention and treatments, and
• advocating for increased public awareness and federal funding for improving health outcomes for diagnosed children.

The Foundation has built capacities and strengths in key areas to further it's mission:
• An experienced and skilled staff and volunteer network that reaches constituents in all 50 states, Canada, and others Internationally.
• An award-wining technology-enabled cloud-based operational structure that creates significant cost efficiencies in overhead assets that fuel program delivery.
• A diverse Scientific Advisory Board of leading scientists and clinical researchers committed to accelerating interest in biomedical research to identify targets for Trisomy 18 treatments and preventions.
• Innovative leadership in NonProfit communications and social media platforms that engages new supporters in the Trisomy 18 cause.
• Leading programs in Peer-to-Peer Fundraising and User-generated Memorial Pages recognized for best practices in National media.
• Significant brand awareness and SEO contributing to making Trisomy 18 Foundation the leading disease advocacy group focused exclusively on the Trisomy 18 condition.

The Foundation has developed a solid operational infrastructure that provides stability, and have formed a gifted board and staff to ensure responsible stewardship of advancing the Foundation's mission. We are vigilantly working on enhancing experience in Development staffing and Board Leadership to increase our impact and accelerate the rate of research investment. There are many promising areas needing greater levels of investment in Trisomy 18-related projects, each of which offers potential targets for treatments that have the potential to reduce the prevalence rates of Trisomy 18 conceptions and increase the life expectancy of children born with Trisomy 18 in the first year of life. We are committed to working toward these goals in the coming years while we stay singularly focused on quality execution and evaluation of impacts.

Financials

TRISOMY 18 SUPPORT 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
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TRISOMY 18 SUPPORT INC

Board of directors
as of 01/07/2023
SOURCE: Self-reported by organization
Board co-chair

Victoria Miller

Trisomy 18 Foundation

Term: 2003 - 2023


Board co-chair

Susan Donohoe

TechServ Alliance

Term: 2004 - 2021

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