Moebius Syndrome Foundation

Home for the Moebius Community

aka Moebius Syndrome Foundation   |   Denver, CO   |  www.moebiussyndrome.org

Mission

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

Ruling year info

1994

Executive Director

Jenny Whitman

Main address

1312 17th Street #976

Denver, CO 80202 USA

Show more contact info

EIN

13-3753992

NTEE code info

Single Organization Support (G11)

Birth Defects (G20)

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

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Centralization of resources and support for individuals, families, and professionals impacted by Moebius syndrome.

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?

Conferences, Research, Support, Networking

Biennial national conferences, regional awareness events, research initiatives, virtual events for education and support, biannual newsletters, monthly e-newsletters, new member packets, college scholarships, mentorship programs.

Population(s) Served
Adults
Children and youth

Where we work

Affiliations & memberships

Facial Equality International 2019

NORD (National Organization for Rare Disease) 2022

Global Genes 2022

Our results

SOURCE: Self-reported by organization

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

Total number of organization members

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses, People with disabilities

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of research studies conducted

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

Conferences, Research, Support, Networking

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

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.

Our goal is to support the Moebius community through research initiatives to help achieve a better understanding of the causes of Moebius syndrome and also to help identify treatments to help with common Moebius symptoms. In addition to this, our priorities are supporting the families and individuals affected by Moebius syndrome by hosting conferences that offer research opportunities, private consults with medical professionals, social and networking, educational sessions, and opportunities to become closer as a community. The Moebius Syndrome Foundation awards conference scholarships to those with a financial disadvantage, and college scholarships each year to deserving students with Moebius. We support the Moebius community by offering new members a welcome packet, hosting a mentorship program, and virtual events to keep the Moebius community informed and connected. We create awareness about Moebius syndrome through our social media platforms, biannual newsletters, partnering with other organizations, and advocating for awareness and change. Our goals are to give the Moebius community answers, hope, and a place to call home.

Good Health and Well Being
The Moebius Syndrome Foundation is committed to improving the good health and well-being of the Moebius community through research initiatives to help achieve a better understanding of the causes of Moebius syndrome and also to help identify treatments to help with common Moebius symptoms. We also provide regular private group discussions for adults, teens, and children with Moebius syndrome, and parents of children with Moebius so that they can achieve a great feeling of emotional support and understanding. Our biennial national conferences are often described as life-changing experiences for our attendees, as they are able to connect with others that uniquely understand the common challenges of living with Moebius syndrome. This gives our members a better feeling of overall wellbeing and support.

Reduced Inequalities
The Moebius Syndrome Foundation is acutely aware of the inequalities that individuals with Moebius syndrome and other craniofacial conditions and disabilities live with each day. From workplace discrimination, bullying at school and in the workplace, and the general public misjudgment, individuals with Moebius syndrome often find themselves targeted and affected. It is our goal to raise awareness about these inequalities by utilizing our vast social media platforms to create awareness, raise important topics, share appropriate educational information from creditable partner organizations, and encourage our members to join these conversations and share our messages. We also work with highly skilled professionals to offer employment advice to families and individuals either preparing for the workforce or already employed. We offer educational sessions both at the national conferences and virtually that help members of our community understand the ADA laws, their rights, and give solutions to help address the times when they face inequality. We also partner with wonderful organizations that provide anti-bullying and self-esteem programs for our children and teens. This helps our youth better understand how to recognize buying, injustices, and how to positively address these issues. In addition to all the above, we follow and coordinate with partners to promote legislative change for persons with disabilities and rare diseases.

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 and families impacted by Moebius syndrome.

  • 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), Suggestion box/email,

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

    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?

    The patient voice has always been central to our research efforts. We have a 16-member Scientific Advisory Board which specializes in various aspects of Moebius syndrome and its associated conditions (physicians, clinicians, and therapists). The Foundation hosts a biennial Research Symposium that connects physicians/clinicians and researchers with the Moebius community. We maintain a database of more than 4,000 individuals interested in or directly impacted by Moebius syndrome. Additionally, we host “The Home For The Moebius Syndrome” Community Facebook Page, with more than 800 members. We have conducted polls using all of these platforms and are responsive to community-raised questions in these forums.

  • 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?

    We are a member-driven association and solicit and incorporate member feedback whenever possible. We have a 12 member board of directors including individuals with Mo, parents, and a physician, as well as a 16-member Scientific Advisory Board which specializes in many aspects of Moebius syndrome and its associated conditions comprised of physicians, clinicians, and therapists. The Foundation hosts a biennial Research Symposium that connects researchers with the MS community. The feedback collected at these events directly impacts research funded. We also maintain a database of >4,000 individuals interested in or directly impacted by MS. We host “The Home For The Moebius Syndrome Community” Facebook Page, with >800 members.

  • 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,

  • What challenges does the organization face when collecting feedback?

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

Financials

Moebius Syndrome Foundation
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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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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

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

Moebius Syndrome Foundation

Board of directors
as of 10/21/2022
SOURCE: Self-reported by organization
Board chair

Jacob Licht

Moebius Syndrome Foundation

Term: 2020 - 2023

Jacob Licht

Vicki McCarrell

Monica Woodall

Rebecca Maher

Novartis

Kelsey Ferrill

Steven Maldonado

Nicole Zeitler

Destiny Bachman

KiOwana Phillips

Jon Fisher

Kathryn Kraus

Bryn Webb

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 10/21/2022

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
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 11/29/2021

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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • 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 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.