SOS EB KIDS CORP

We believe that no child should live in pain

aka SOS EB Kids   |   Greenwich, CT   |  www.sosebkids.org

Mission

​“Our mission is to alleviate the suffering of Brazilian kids with EB, increasing their quality of life, whether through material and emotional support or through information and awareness.”

Ruling year info

2015

President

Christiane Brasileiro

Vice-President

Ingrid Tonelli

Main address

364 Davis Ave # 2

Greenwich, CT 06830 USA

Show more contact info

Formerly known as

SOS EB KIDS CORP

EIN

47-4973411

NTEE code info

Health Support Services (E60)

Specifically Named Diseases (G80)

Health Support Services (E60)

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

Epidermolysis Bullosa is a rare genetic disease, for which no cure has been found yet. Many children living with Epidermolysis Bullosa (EB) in Brazil do not have access to much needed wound care supplies to alleviate their constant suffering and diminish the deterioration of their global health.

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?

Wound Care Distribuition Program

We assist 70 Brazilian Children with Epidermolysis Bullosa, providing them with the wound care supplies they need.

Population(s) Served

The Godmother's Project was created when we realizd that the families needed more than supplies. We have 25 volunteers who provide daily emotional and informative support to our 70 families living with a child or children with Epidermolysis Bullosa (EB)

Population(s) Served

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 children with a source of ongoing care

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

Wound Care Distribuition Program

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

We honor and respect your efforts to support us SOS EB Kids is 100% run by volunteers which let us apply 81% of our 2017 donations to our goal: buying and sending wound care supplies to our 70 kids

Number of parents and caregivers who received dental health education

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of wound care supplies items provided

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

Wound Care Distribuition Program

Type of Metric

Outcome - describing the effects on people or issues

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.

We aim to fulfill the need for wound care supplies of 70 Brazilian families that have children with Epidermolysis Bullosa (EB). Most of our families come from underprivileged sectors of the Brazilian society and live in a merely tragic situation with their child with EB.

We conduct a Wound Care Distribuition Programa as well as emotional and informative support to our 70 families that have kids with Epidermolysis Bullosa.

Along the five years of existence of the SOS EB Kids Corp. we have been able to organize its operation to face the challenges to achieve our goal.

We were able to launch and establish a Project called the "Godmothers Project" where 25 "godmothers" and coordinators make viable the communication between our NGO and the families we assist. They give emotional and informative support, as well as they keep track of the wound care the families need which are fulfilled by our Wound Care Distribution Program, lead by a logistics operational team. The team is responsible for buying, storing and sending the wound care supplies that were demanded by the families.

Currently, we are expanding to offer multidisciplinary assistance to our families, developing programs for improvement of their Nutritional and Oral Health.

Five years ago we started our work assisting one child. A year later we had 50 children. Nowadays we honor our mission assisting 70 children with EB. We were able to go beyond our first intent which was to provide them with wound care supplies - we have created bonds with our families through the daily emotional and informative support we offer them. They trust and appreciate the SOS EB Kids Corp. presence in their lives.

Some of our families didn't even know the variety of dressings, ointments, tubular nets we donate which considerably increase their kid's quality of life.

Our ethical, hard and committed work has been very much rewarded by the credibility and respect with have gain from the EB community in Brazil. We have several impressive reviews from the families we assist.

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 shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Paper surveys, Community meetings/Town halls, 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 strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

SOS EB KIDS CORP
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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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lock

Connect with nonprofit leaders

Subscribe

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.

SOS EB KIDS CORP

Board of directors
as of 10/19/2020
SOURCE: Self-reported by organization
Board chair

Christiane Brasileiro

Christiane Brasilero

Ingrid Tonelli

Maria Augusta Mackeldey

Patrícia Tossato

Rizzia Froes

Roberto Castello Branco

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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? No
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 10/13/2020

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
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
Hispanic/Latino/Latina/Latinx
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data