PLATINUM2022

AXYS

Paoli, PA   |  genetic.org

Mission

AXYS's mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives. AXYS, founded in 1989 when the mother of a child with 47,XXY wrote to Ann Landers seeking to start a support group, is a dedicated to individuals with sex chromosome variations: 47,XXY; 48,XXYY; 48,XXXY; 49,XXXXY; 46,XY/47,XXY mosaic; 47,XYY; 47,XXX and other variants.

Ruling year info

1996

Executive Director

Carol Meerschaert, MBA, RD

Main address

PO Box 659

Paoli, PA 19301 USA

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Formerly known as

Klinefelter Syndrome and Associates

KS&A

EIN

33-0395993

NTEE code info

Birth Defects (G20)

Health Support Services (E60)

Specifically Named Diseases (G80)

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

The Association for X and Y Chromosome Variations (AXYS) is dedicated to addressing the needs of those affected by one or more extra X and/or Y chromosomes also called sex chromosome aneuploidy (SCA). While not rare, in fact having an X or Y chromosome variation is a common as being a natural redhead, most people don't know they have extra chromosomes. We want to raise awareness and access to testing so that all are informed. People with SCA often do not have access to health professionals with expertise in this area. They are often misdiagnosed and not offered treatments and educational accommodations that are proven effective. Parents who learn their child has an SCA need support and detailed information in order to make decisions for their children. Adults with SCA often need services and benefit from information and support.

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?

Helpline

One-on-one telephone support for individuals with concerns or questions regarding X and Y chromosome variations. Staffed by trained volunteers, callers are matched with parents and professionals with experience in the specific area the caller seeks support or information about.

Population(s) Served
Adults
Adolescents

In 2015, the AXYS Board of Directors voted to approve funds to help develop the AXYS Clinic and Research Consortium (ACRC). This exciting development committed us to help organize, fund and build out a clinical consortium that will operate as independent clinics committed to collaborating with one another, sharing informational resources, and exploring opportunities to participate in joint research projects.

In addition, AXYS organizes annual meetings of the consortium at which members meet to discuss topics important to the SCA community.

The goal of AXYS is to ensure that all families impacted by any of the chromosome variations have access to the best available evaluation, treatment or treatment recommendations. The AXYS Clinic & Research Consortium is an important means of achieving that goal.

Population(s) Served
Children and youth
Adults

Held every other year, the AXYS Family Conference brings children and adults with chromosome variations, their families and caregivers together with advocates, community organizations, parent group leaders, clinical and research professionals including genetic counselors, geneticists, and endocrinologists.

Population(s) Served
Adults
Children and youth

Growing library of educational webinars.

Population(s) Served
Adults
Children and youth

Local and regional support groups for families and individuals with X and Y chromosome variations.

Population(s) Served
Adults
Children and youth

Patient-driven referral database of professionals to enable newly diagnosed individuals to find competent, experienced care.

Population(s) Served
Children and youth
Adults

Active participation in ongoing research initiatives; convening worldwide scientific meetings; supporting recruitment for research.

Population(s) Served
Adults
Children and youth

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of paid participants in conferences

This metric is no longer tracked.
Totals By Year
Related Program

AXYS Family Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AXYS holds a Family Conference every other year. In 2019 our Conference had nearly 400 attendees. Our 2021 Conference was 100% virtual due to COVID 19 and attracted households from 20 countries.

Number of clinic sites

This metric is no longer tracked.
Totals By Year
Related Program

AXYS Clinic and Research Consortium (ACRC)

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Founded in 2015, the AXYS Clinic and Research Consortium (ACRC) is a clinical consortium that operates as independent clinics which collaborate with one another.

Number of phone calls/inquiries

This metric is no longer tracked.
Totals By Year
Related Program

Helpline

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Trained volunteers answer calls about all X&Y variations and match callers with a peer to offer support, education and resources.

Number of new grants received

This metric is no longer tracked.
Totals By Year
Related Program

AXYS Clinic and Research Consortium (ACRC)

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

AXYS seeks funding to establish clinics for adults and to provide CME courses for physicians.

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

New users to genetic.org

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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 are focused on sharing knowledge, offering support, and initiating action to help improve lives of individuals and families.
In 2022 AXYS will:
Educate families world-wide via the AXYS webinar series.
Build the X&Y variation community with virtual social events led by individuals with X&Y variations including XXY, and Trisomy X.
Educate physicians with our first CME course Klinefelter Syndrome in Adults.
Bring underrepresented groups in our community together by holding Families of Color, Spanish language, LGBTQ+ and other virtual support groups.

We share knowledge via our website, a Helpline, local support groups, world-wide virtual support groups, webinars and a family conference every other year. Support is given via the Helpline and support groups that are both in person and online.

Our ever expanding AXYS Clinic and Research Consortium (ACRC) works to create specialty clinics for children and adults with X and Y variations, create consensus documents to inform health practitioners, and fosters research on X and Y variations.

Our dedicated professional staff and volunteer board of directors have experience with these conditions, often as an individual with an extra X or Y chromosome or a parent/caregiver of an individual. Our AXYS Clinical and Research Consortium consists of doctors, nurses, social workers, clinic coordinators and researchers working in this area further our goals and provide guidance to AXYS.

The ACRC has established 16 clinics located in the US, Canada, Denmark and the UK.
Our AXYS Family Conference brings in top researchers and clinicians to share expertise with over 500 family members every other year. In 2021 the conference was virtual and we will always offer a virtual component so that community members can attend no matter their location or schedule.
Our Helpline assists over 600 people each year referring them to published research, clinics and offering peer support.

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?

    Individuals with X & Y chromosome variations and their families.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

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

    To identify and remedy poor client service experiences, 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, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We held an ACRC meeting on Families of Color bringing the concerns directly to the medical directors of the clinics and planning for research. We will continue to offer conference sessions virtually even when we return to an in person conference.

  • With whom is the organization sharing feedback?

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

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

    We collect feedback from the people we serve at least annually, 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 look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, 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, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

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

Financials

AXYS
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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.

AXYS

Board of directors
as of 05/09/2022
SOURCE: Self-reported by organization
Board chair

Erin Frith

AXYS

Term: 2020 - 2023

Erin Frith

Susan Howell

Hannah Acevedo

Gail Decker

Andrea Millett

Stuart Howards, MD

John Sloss

Carrie Curtis

Justin Dausch

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

Organizational demographics

SOURCE: Self-reported; last updated 12/15/2020
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

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 with 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: 01/18/2022

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 review compensation data across the organization (and by staff levels) to identify disparities by race.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.