SILVER2022

MOWAT-WILSON SYNDROME FOUNDATION

Supporting Rare and Special Families.

Las Vegas, NV   |  www.mowat-wilson.org

Mission

The mission of The Mowat-Wilson Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education. Mowat-Wilson Syndrome is a recently discovered syndrome (defined in 1998) and much is still being learned about the physical, behavioral and developmental issues associated with this rare genetic disorder. Major signs include: distinctive facial features, intellectual disability, delayed development, intestinal disorders, seizures, congenital heart disease, agenesis of the corpus callosum, male genital abnormalities (hypospadias), and major expressive language difficulty.

Ruling year info

2014

Executive Director

Jodi Franke-Young

President of the Board of Directors

Paul Jacobi

Main address

4009 Tyler William Ln

Las Vegas, NV 89130 USA

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EIN

46-3884135

NTEE code info

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

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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?

Mowat-Wilson Syndrome Research

The Mowat-Wilson Syndrome Foundation promotes and funds MWS research

Population(s) Served
Age groups

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2015

Board Source 2018

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 programs documented

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

Age groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of participants attending course/session/workshop

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

Age groups

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of reports written/published

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

Other - describing something else

Direction of Success

Holding steady

Number of organizational partners

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

Work status and occupations

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of hours of training

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

Work status and occupations

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Total number of new organization members

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

Age groups

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of individuals attending community events or trainings

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

Age groups

Type of Metric

Output - describing our activities and reach

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.

2021-2025 Strategic Plan
1-Year Plan
Fundraising:
Objective #1: Develop a fundraising strategy

Raising Awareness:
Objective #1: Increase awareness of current MWS research
Objective #2: Develop a strategic plan to increase awareness about MWS among physicians/healthcare facilities/etc.
Objective #3: Increase MWSF's presence on social media: Facebook, Pinterest, YouTube, Instagram

Supporting Community:
Objective #1: Increase reach to MWS families in the US
Objective #2: Develop a comprehensive handbook for newly diagnosed MWS families
Objective #3: Develop a comprehensive handbook for caregivers, school administrators, and healthcare providers

Strengthening the Structure of MWSF:
Objective #1: Alter BOD meetings from monthly to quarterly - with monthly committee meetings instead
Objective #2: Develop a plan to move the MWSF website to a new hosting service to improve the visibility of the website and decrease time needed to make changes
Objective #3: Increase transparency of MWSF in terms of BOD meetings/finances/grants/etc.
Objective #4: Identify specific research objectives
Objective #5: Develop equitable, fair and transparent process for awarding research grants

3-Year Plan
Fundraising:
Objective #1: Develop a fundraising strategy annually
Objective #2: Increase fundraising by 10% annually

Raising Awareness:
Objective #1: Continue to raise awareness about MWS among physicians/healthcare facilities/etc.
Objective #2: Continue to raise awareness about MWS research

Supporting Community:
Objective #1: Develop a video/visual story education series for caregivers and patients
Objective #2: Increase the types of support/services offered by MWSF to its community
Objective #3: Develop a strategic plan for annual conferences
Objective #4: Develop a strategic plan for regional gatherings of MWS families
Objective #5: Increase reach to MWS families abroad

Strengthening the Structure of MWSF:
Objective #1: Increase engagement with the Medical Advisory Board
Objective #2: Improve the effectiveness of the BOD through training and support
Objective #3: Increase engagement with the Community Advisory Board
Objective #4: Improve the effectiveness of BOD committees through training and support
Objective #5: Develop a better method to measure the impact of MWSF

5-Year Plan
Fundraising:
Objective #1: Develop a fundraising strategy annually
Objective #2: Increase fundraising by 10% annually

Raising Awareness:
Objective #1: Continue to raise awareness about MWS among physicians/healthcare facilities/etc.
Objective #2: Continue to raise awareness about MWS research

Supporting Community:
Objective #1: Conduct annual surveys to determine how the MWS community can be supported better

Strengthening the Structure of MWSF:
Objective #1: Conduct annual survey of BOD to determine how it can be supported better
Objective #2: Conduct survey of MWSF partners to see how relationships can be improved
Objective #3: Review best practices of Rare Disease Organizations

Workplans for the 1-Year Strategic Plan

Fundraising Developing a fundraising strategy
#1 Determine In-person Fundraisers to be held A. Determine the number of in-person fundraisers BOD Fundraising Committee & Exec Dir Number approved by BOD November 2021
B. Determine the purpose of each fundraiser BOD Fundraising Committee & Exec Dir Purposes approved by BOD November 2021
#2 Determine the number of online fundraisers A. Determine the number of online fundraisers BOD Fundraising Committee & Exec Dir Number approved by BOD November 2021
B. Determine the purpose of each fundraiser BOD Fundraising Committee & Exec Dir Purposes approved by BOD November 2021
#3 Research options for text-to-give fundraising A. Determine the number of text-to-give fundraisers BOD Fundraising Committee & Exec Dir Number approved by BOD November 2021
#3 Develop Official 2022 Fundraising Strategic Plan A. Information regarding in-person and online fundraisers to be collated and prepared in a report Exec Dir Final report approved by BOD December 2021
#4 Fundraisers completed based on the approved 2022 Fundraising Strategic Plan A. Utilize Aplos to support all in-person fundraisers Exec Dir All completed fundraisers to be tracked and reported: days of fundraiser; number of donors; total amount raised Monthly and at the fiscal year end of 2022
B. Utilize Aplos supports to conduct fundraisers on Facebook and website & through emails Exec Dir All completed fundraisers to be tracked and reported: days of fundraiser; number of donors; total amount raised Monthly and at the fiscal year end of 2022
#2 Identify the most successful fundraisers A. Use data from completed fundraisers to determine which were most successful Exec Dir Discussion about the data and decisions made about most successful fundraisers Fiscal Year End of 2022
B. Include data and recommendations in the subsequent Fundraising Strategic Plan Exec Dir Documentation in subsequent Fundraising strategic plan Dec-22

Raising Awareness #1 Increase awareness of current MWS research #1 Introduce MWS community to researchers A. Hold online “Meet the Researcher” webinars Exec Dir # of participating researchers, # of webinars, # of attendees overall and per webinar December 2021
#2 Introduce MWS community to research A. Provide information about research on website and social media Exec Dir # of research articles posted on website December
2021
#2 Develop a strategic plan to increase awareness about MWS among physicians/healthcare facilities/etc. #1 Identify appropriate associations, organizations, and groups that would be appropriate to contact A. Make a list of appropriate associations, organizations, and groups that would be appropriate to contact Exec

The Executive Director has extensive experience as a nonprofit leader. She has extensive experience developing strategic plans and helping organizations exceed their goal.

The organization has a dedicated board of directors as well as a medical advisory board and a community advisory board that help the organization meet its goals

Every year, the Mowat-Wilson Foundation provide new Welcome Packets to newly diagnosed MWS families

In 2021, the Foundation has held 2 Meet the Researcher Webinar Series

In 2021, the Foundation has increased its presence on social media

In 2021, the Foundation developed a five-year strategic plan

In 2021, the Foundation moved all of its financial accounting processes to a comprehensive online platform - Aplos

Financials

MOWAT-WILSON 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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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.

MOWAT-WILSON SYNDROME FOUNDATION

Board of directors
as of 10/20/2022
SOURCE: Self-reported by organization
Board co-chair

Paul Jacobi

Mowat-Wilson Syndrome Foundation

Term: 2022 - 2023


Board co-chair

Deborah Curry

Jacobi & Case, P.C.

Term: 2022 - 2023

Paul Jacobi

Laura Chrysostomo

Katie Fineberg

Al Triunfo

John Sell

Catherine Tolman

Deborah Curry

David Miller

Felisha Norrington

Adero Allison

Karen Key

Karissa Whisner

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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 10/20/2022

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
Disability status
Person without a disability

The organization's co-leader identifies as:

No data

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data