YOUNG SURVIVAL COALITION INC

Facing breast cancer in young adults together.

aka YSC   |   New York, NY   |  www.youngsurvival.org

Mission

Young Survival Coalition (YSC) strengthens the community, addresses the unique needs, amplifies the voice and improves the quality of life of young adults affected by breast cancer, locally, nationally and internationally.

Notes from the nonprofit

YSC is committed to innovate and enhance YSC's service delivery to ensure continued relevance and increased access to our programs and resources. YSC will facilitate every constituent's ability to personalize their own engagement with the organization and will continue to engage underserved communities by implementing the diversity and inclusion roadmap.

Ruling year info

1999

Chief Executive Officer

Ms. Jennifer Merschdorf

Chief Program Officer/Deputy Chief Executive

Ms. Stacy Lewis

Main address

75 Broad Street, Suite 409

New York, NY 10004 USA

Show more contact info

EIN

13-4057685

NTEE code info

Cancer (G30)

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Compared to their older counterparts, young adults diagnosed with breast cancer face issues that may significantly impact their quality and length of life. These issues are often amplified for those diagnosed with metastatic breast cancer, including but not limited to: > Aggressive forms of cancer: Young women are generally diagnosed with more aggressive forms of breast cancer with higher fatality rates. > Lack of research: As the incidence of young women with breast cancer is much lower than in older women, young women are often underrepresented in research studies. > Early onset menopause: Chemotherapy and hormonal treatments can sometimes bring on premature menopause, which can significantly impact their quality of life. > Fertility: Breast cancer treatment may affect a woman’s ability and plans to have children. > Relationships and dating: Whether married or single, intimacy issues often arise for young adults diagnosed with breast cancer and their co-survivors.

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?

Breast Cancer Services

YSC fosters a nationwide community of young adults affected by breast cancer through a variety of programs including but not limited to its informative website and digital resources; virtual and in-person support groups; conferences and webinars; diversity initiatives; distribution of educational materials.

Population(s) Served
Women and girls
Caregivers

In-person and online educational programming and conferences, healthcare provider training, youngsurvival.org and navigator series for those newly diagnosed and in-treatment, living with metastatic breast cancer, post-treatment, and 5-years out of treatment.

Population(s) Served
Women and girls
Caregivers

Provide local in-person networking groups, digital meetups and communities, and one-on-one support with trained peer mentors.

Population(s) Served
People with diseases and illnesses
Caregivers

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2014

Charity Navigator 2014

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.

We provide free resources and support networks to people diagnosed with breast cancer age 40 and under.

Established in 1998, Young Survival Coalition (YSC) is the largest nonprofit dedicated exclusively to young adults diagnosed with breast cancer age 40 and under and their co-survivor support networks. YSC also educates and influences the medical, research and legislative communities to address breast cancer in young adults.
Through educational resources and programming, annual conferences, and local and online support networks, YSC ensures no young adult faces breast cancer alone.

> Educate and empower young adults affected by breast cancer and their co-survivor support networks that are specific to their experiences and needs, from diagnosis and treatment to long-term survivorship;

> Provide local in-person networking groups, digital meetups and communities, and one-on-one support with trained peer mentors;

> Work with healthcare providers, researchers and legislators to educate them about the unique issues young adults face, and

> Advocate for more studies on breast cancer in young adults, diverse representation in research and access to quality care.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Young Survival Coalition serves young adults with breast cancer and their co-survivors. This includes all young adults diagnosed age 40 and under, through all stages of diagnosis, treatment and survivorship.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Young Survival Coalition is dedicated to incorporating important feedback from its community. For example, many young adults choose not to undergo breast reconstruction after a mastectomy. The surgical technique that is used is called aesthetic flat closure. YSC partnered with patient advocates who are passionate about making information on aesthetic flat closure available, so they feel empowered and educated about this as an option. As a result, YSC now has a quarterly virtual hangout for those in the “flattie” community, and it is also working with these patient advocates to provide comprehensive and supportive information on the YSC website.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    It is YSC’s job to take in feedback from constituents/advisory groups and hear directly from the voice of survivors, but to then to expand and implement in a way that we, as the leader in young adults and breast cancer, deem comprehensive and impactful. We value the feedback and insights from those in the community who are served by YSC's mission.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

YOUNG SURVIVAL COALITION 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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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

YOUNG SURVIVAL COALITION INC

Board of directors
as of 11/16/2021
SOURCE: Self-reported by organization
Board chair

Desiree Walker

Courtney Hagen

John Hennessy

Mike Wirth

Karen Kochevar

Desirée Walker

Pablo Colón

Christine Duffy

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 ? No
  • 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

Organizational demographics

SOURCE: Self-reported; last updated 11/16/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
Black/African American/African
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 11/16/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.