BECKWITH-WIEDEMANN CHILDRENS FOUNDATION INTERNATIONAL

Assisting BWS Families One Child At A Time

aka BWCFI   |   Wilsonville, OR   |  www.beckwithwiedemann.org

Mission

The BWCFI exists solely to support families diagnosed with Beckwith-Wiedemann Syndrome (BWS), a rare genetic syndrome (1 in approx. 10,000 births). Our support consists of supplying resources to these families in the form of informational BWS DVDs, referrals to medical professionals familiar/experienced with BWS and it's challenges. On occasion we provide funds to families unable to travel to consult with these professionals. We also act as a liaison for families seeking air vouchers (donated by the airlines) to enable them to travel by air for these consultations. In addition to assisting with travel, we also have been involved in advocating with insurance companies on behalf of BWS patients seeking treatment but being denied eligibility for insurance coverage.

Ruling year info

2014

Director

50370931698 Anita Ament

Director

Kristen Burr

Main address

5020 SW Eastgate Drive

Wilsonville, OR 97070 USA

Show more contact info

EIN

47-1892298

NTEE code info

Specifically Named Diseases (G80)

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

The BWCFI exists solely to assist families diagnosed with Beckwith-Wiedemann Syndrome (BWS) , a rare genetic syndrome (1 in approximately 10,000 births). We provide free BWS DVDs worldwide (including postage) to anyone requesting information on BWS as well as provide educational materials for these families.

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?

Organizing BWS Family Meetings Worldwide

It is our current goal to travel to different parts of not only the United States but also around the world to bring local BWS families together. These trips are funded by our own funds not using any donated monies. We do this to promote the further education of BWS and to encourage communication among local families diagnosed with Beckwith-Wiedemann Syndrome.

Population(s) Served
Adults
People with diseases and illnesses

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.

Rare disease education (i.e. Beckwith-Wiedemann Syndrome)

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

Adults, Children and youth

Related Program

Organizing BWS Family Meetings Worldwide

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The Beckwith-Wiedemann Children's Foundation Int'l authored an informational DVD in 2006 (updated in 2016). This was the first time that information regarding BWS was available directly to families.

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 work is never "done" as daily new babies and children are diagnosed with Beckwith-Wiedemann Syndrome. Even now in the 21st century, many physicians and professionals do not know the vital screening protocols nor do they often agree with the diagnosis. The BWCFI exists for BWS families struggling to get the initial diagnosis and/or those who have a diagnosis but cannot get approval from their medical team for screening and treatment.

Until NO family struggles to get a diagnosis and subsequent screening, we will make ourselves available to assist in any way BWS families may need us. This is very important since this is a rare syndrome (1 in approx. 10,000 births) and these families need to know that they are not alone.

We have a presence on social media platforms as well as our own web page (www.beckwithwiedemann.org) to reach families worldwide diagnosed with Beckwith-Wiedemann Syndrome. With the help of 21st century technology, it is now easier to reach around the globe to assist families requesting our help.

One recent case was assisting a family from the country of Georgia to get additional screening following his apparently routine tongue surgery (common for our BWS babies). Stranded in the US during a pandemic, we reached out to our donors to secure funding to assist this family get additional cancer screening which revealed liver cancer (something to which our children can be prone). Following this additional screening and the advocacy of the BWCFI, this child was admitted to St. Jude's Hospital and has totally recovered and returned to his home country.

With the above strategies in place at the present time, we ARE meeting our goals to spread knowledge and correct information about Beckwith-Wiedemann Syndrome.

However, there is always room for improvement and additional avenues to connect with the BWS community. Through additional fundraising, we would like to be able to supply a copy of our BWS DVD to each and every geneticist and pediatrician in the United States and beyond to help educate about BWS and the screening protocols. One way we have discussed doing this is by attending pediatric conferences and supplying our DVD in the materials supplied at those conferences along with a short brochure outlining the syndrome.

Being volunteers, we are ready, willing and able to be available to accomplish our goals as the funding allows.

We are daily accomplishing our initial goals to provide the correct and complete information on Beckwith-Wiedemann Syndrome (BWS) as we interact with the BWS community through our DVD and online support groups.

However, as we stated before, each day new families are touched by BWS. Even though each of those children is wonderfully unique, the basic questions and needs are the same. We are here to help those families navigate the early troubled and scary seas of the BWS world. We will strive to keep supplying help and support as long as families need us.

In reality, we will never completely accomplish our goals as long as families struggle with diagnosis and treatment surrounding Beckwith-Wiedemann Syndrome.

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.
  • Who are the people you serve with your mission?

    The BWCFI was created as a bridge to assist patients and their families in the complex world of Beckwith-Wiedemann Syndrome and the medical issues relative to that syndrome. This includes - but is not limited to - the education and reference regarding current medical protocols (screenings to discover cancers early) and the distribution of our free BWS DVD that covers the basics of Beckwith-Wiedemann Syndrome. Our social media network is broad and covers the entire globe and we often help individuals in foreign countries locate professionals in their geographic areas to assist them in their many medical appointments and concerns. Our services are free and given upon request.

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

    Focus groups or interviews (by phone or in person), online,

  • 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,

  • What significant change resulted from feedback?

    We very recently updated our web page to include additional social media avenues that families can use to access BWS information and get assistance when needed.

  • With whom is the organization sharing feedback?

    Our board, on our website,

  • How has asking for feedback from the people you serve changed your relationship?

    As stated previously, we exist solely to assist Beckwith-Wiedemann Syndrome families and rely on their input through our social media outlets to make changes as they give us feedback on things they need.

  • Which of the following feedback practices does your organization routinely carry out?

    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 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?

    It is difficult to get the people we serve to respond to requests for feedback, Any feedback is intermittent and rare.,

Financials

BECKWITH-WIEDEMANN CHILDRENS FOUNDATION INTERNATIONAL
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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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BECKWITH-WIEDEMANN CHILDRENS FOUNDATION INTERNATIONAL

Board of directors
as of 06/14/2022
SOURCE: Self-reported by organization
Board co-chair

5737603712 Kristen Burr

Beckwith-Wiedemann Children's Foundation International

Term: 2020 - 2026


Board co-chair

Lauren Smith

Anita Ament

Kristen Burr

Lauren Smith

Sarah Bradshay

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • 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 6/14/2022

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
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
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
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 06/14/2022

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 employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • 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 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.