GOLD2023

PRADER WILLI SYNDROME FAMILIES UNITED INC

aka PWS Families United   |   Higganum, CT   |  www.pwsfamiliesunited.org

Mission

Prader-Willi Syndrome Families United Inc. is an organization created to support Connecticut families and individuals living with Prader-Willi syndrome, through increased awareness and education, advancing research and the establishment of a regional community.

Ruling year info

2015

Principal Officer

Amy Tenbrunsel

Co Principal Officer

Deborah Flanagan

Main address

P.O. Box 752

Higganum, CT 06441 USA

Show more contact info

EIN

47-2760059

NTEE code info

Specifically Named Diseases (G80)

Specifically Named Diseases Research (H80)

Fund Raising and/or Fund Distribution (E12)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Families of loved ones with Prader-Willi syndrome can feel very isolated and alone. Our non-profit aims to bring families in this rare disease community together. We provide support and educational opportunities and interventions to area families. We also provide funding to many research opportunities to better the future of our family members with PWS.

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?

Educational Events

PWS Families United seeks to provide educational opportunities to families, individuals and professionals by inviting regional and national experts speak on specific topics designed to enhance the lives of those living with PWS, like critical early intervention services, daily coping strategies, medical advances, and new and upcoming clinical trials and research opportunities.

Population(s) Served
Adults

5K walk and family event supporting people living with PWS. The yearly event features a 5K walk and Touch-a-Truck event with local police, fire and EMT vehicles participating. The event also features various family friendly activities like a DJ, face painters, and balloon artists with the aim to bring together a community of families from our state and beyond to raise awareness, funding and create a network of support for people living with PWS.

Population(s) Served
People with disabilities
Adults

Along with the Mac Pact, PWS Famiilies United provides support meetings for family members and care givers of people with PWS. These meetings provide an opportunity for education and support.

Population(s) Served
Caregivers
Families

Where we work

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.

Prader-Willi Syndrome Families United Inc. is an organization created to support families and individuals living with Prader-Willi syndrome. This is accomplished by:
• Establishing a network of support, strength and hope by connecting families from throughout the state and region.
• Expanding awareness within our regional community through various sponsored events throughout the year, like the annual 5K Walk and Roll for PWS
• Providing educational opportunities to families, therapists, medical professionals, educators and community through regional events and relevant written literature.

Through our annual Walk and Roll for PWS we spread awareness of this rare disease, raise funding and develop a community of support for family members and people living with Prader-Willi syndrome.

We are a small group of families working together to raise awareness and funding in the New England and Tri-state area. Through social media and family support groups, we connect with each other. These small connections allow us to raise funding from our family, friends and the community.

We started as a group of 2 families and now we support a group of more than 20 families strong. We have also donated over $170,000 to research, educational and support opportunities for people living with PWS.

Financials

PRADER WILLI SYNDROME FAMILIES UNITED 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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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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PRADER WILLI SYNDROME FAMILIES UNITED INC

Board of directors
as of 12/28/2023
SOURCE: Self-reported by organization
Board co-chair

Amy Tenbrunsel


Board co-chair

Deborah Flanagan

Christine Geraci

Organizational demographics

SOURCE: Self-reported; last updated 12/6/2020

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
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data