Many Faces of Moebius Syndrome
Supporting our Community with Love, Empathy, and Strength
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Awareness and Advocacy
Our mission is to improve the lives of individuals and families affected by Moebius Syndrome by increasing awareness, advocating for their medical needs, and providing resources and support. Through education, outreach, and collaboration, we aim to raise public understanding of this rare neurological disorder and promote inclusion and acceptance of those living with it. We also strive to empower and train future leaders in the Moebius Syndrome community by providing leadership development opportunities, mentorship, and networking. Our ultimate goal is to foster a community of compassion, strength, and resilience that empowers individuals with Moebius Syndrome to achieve their full potential and thrive in all aspects of life. We believe that everyone deserves the chance to live their best life, and we are committed to making that a reality for individuals and families affected by Moebius Syndrome by fostering a robust and supportive community.
Financial Assistance for Medical Supplies
The Many Faces of Moebius Syndrome is 100% committed to providing financial assistance towards the medical needs of individuals with Moebius Syndrome.
Each fiscal quarter (Q1 2023: January 1 – March 31, Q2 2023: April 1 – June 30, Q3 2023: July 1 – September 30, Q4 2023: October 1 _ December 31, 2023) we will allocate $250 to cover the cost of your uninsured medical needs on items like eye-ointment, special feeding bottles, and special positioning chairs, etc. Totaling $1000.00 a year in payouts.
At the end of each quarter, we will review all applications and approve those with the greatest need. If approved the MFOMS will pay the company supplying the item directly on your behalf. No payments will be made to the applicant.
If you are not approved for assistance, you are welcome to reapply the following quarter. Applications will not roll over. Applications need to be resubmitted each quarter.
Moebius Blessings
Moebius Blessings is the annual MFOMS campaign to help ease the stress of the holidays for the Moebius families through the generosity of donors throughout the year. Many Faces of Moebius Syndrome provides gifts to families struggling during the holidays. Each child in the family will receive gifts specified by the parent/parents, arriving beautifully wrapped, as well as a loaded stocking for each child. A gift card is provided to each family for a holiday meal to be purchased and shared as they celebrate. The beauty of the campaign; a Moebius parent can apply for the award, or a family member/friend can apply on behalf of the Moebius family they want Blessed. All nominations are held in confidence, allowing the families to enjoy the holidays even more.
Camp Moebius
Each year we host a camp for moebius syndrome community. For more information go to: www.campmoebius.info
Where we work
External reviews
Photos
Videos
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
-
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 strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
-
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 ask the people who gave us feedback how well they think we responded
-
What challenges does the organization face when collecting feedback?
Financials
Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild 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.
Connect with nonprofit leaders
SubscribeBuild 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.
Many Faces of Moebius Syndrome
Board of directorsas of 09/03/2023
Mr. Timothy Smith
Many Faces of Moebius Syndrome
Kacie Nievesmassol
Many Faces of Moebius Syndrome
Tim Smith
Kacie Nievesmassol
Andrea Sweetwood-Smith
Chelsea Walker
Tony Mitchell
Angela Woy
Catherine Barbe
Board leadership practices
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
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
No data
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
Equity strategies
Last updated: 08/09/2023GuideStar 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
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- 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.
- 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 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.