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

Principal Officer

5037031698 Anita Ament

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

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
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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    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,

  • With whom is the organization sharing feedback?

    on our website,

  • What challenges does the organization face when collecting 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 10/14/2020
SOURCE: Self-reported by organization
Board co-chair

5037031698 Anita Ament

Beckwith-Wiedemann Children's Foundation International

Term: 2014 -


Board co-chair

Kristen Burr

Anita Ament

Kristen Burr

Lauren Smith

Bernadette Haberman

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 07/16/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data