Disease, Disorders, Medical Disciplines

BECKWITH-WIEDEMANN CHILDRENS FOUNDATION INTERNATIONAL

Assisting BWS Families One Child At A Time

aka BWCFI

Wilsonville, OR

Mission

The BWCFI exists solely to support families diagnosed with Beckwith-Wiedemann Syndrome (BWS), a rare genetic syndrome (1 in approx. 11,000 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

2014

Principal Officer

5037031698 Anita Ament

Director

5037031698 Cheryl Hendrickson

Main Address

5020 SW Eastgate Drive

Wilsonville, OR 97070 USA

Keywords

Educational and emotional support for families diagnosed with Beckwith-Wiedemann Syndrome

EIN

47-1892298

 Number

1497233492

Cause Area (NTEE Code)

Specifically Named Diseases (G80)

IRS Filing Requirement

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

Social Media

Programs + Results

What we aim to solve

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Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Organizing BWS Family Meetings Worldwide

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

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

TOTALS BY YEAR
Population(s) served

General/Unspecified

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.

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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. 14,000 births) and these families need to know that they are not alone.

We are updating our BWS DVD this year (currently in process to secure funding) to commemorate the upcoming 10-year anniversary (2016) of the initial release in 2006.

In addition, this year for the first time we have made our DVD chapters available on social media (Facebook and YouTube) for families to have immediate access and to download and share as needed. This was our initial thought when the first DVDs were released and they were created without any restrictions on duplication. One way this can serve to spread knowledge and CORRECT information is through immediate access during medical appointments using smartphones and similar devices.

The directors are COMMITTED to serving the Beckwith-Wiedemann families worldwide in as many ways as we can.

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.

Interestingly, our success is measured only through direct contact with our families and their experiences. With the rise of social media (Facebook and the like), we can track the progress of individual families as they interact with their medical teams. When a physician or other medical professional actually requests our DVD or makes reference to it through families, we KNOW we are making an impact.

Our motto is "changing the BWS world one family at a time".

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.

External Reviews

Financials

BECKWITH-WIEDEMANN CHILDRENS FOUNDATION INTERNATIONAL

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Operations

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Board Leadership Practices

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SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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