Worldwide Syringomyelia & Chiari Task Force Inc.

"Race to Stop It"

aka Worldwide Syringomyelia & Chiari Task Force Inc.   |   Lawrenceville, GA   |  http://www.wstfcure.org

Mission

Our mission is to educate the world about the disease Syringomyelia, Syringobulbia, Chiari Malformation, and the complications that can co-exist with them. Our focus is to provide updated education to all medical specialties about these diseases through online teaching videos, conference calls, and delivery of peer to peer inservices. We provide members, families, caregivers, medical professionals of all disciplines, and attorneys excellent resources to navigate Syringomyelia, Syringobulbia, and Chiari with emphasis on collaboration and continuity of care across all medical disciplines using patient-centered approaches that center on our mission of education. Overall, our desire is to increase understanding across all medical disciplines to improve direct patient care and save lives!

Notes from the nonprofit

WSCTF is a family of compassionate healthcare professionals focused on change to empower the public and healthcare professionals to unite, remove barriers to accessible care, and promote widespread educational efforts to minimize error, decrease complications, increase understanding, and provide improved quality of life for all men, women, and children affected throughout the lifespan. We welcome everyone and provide free resources for all who are in need of support. We believe that the treatment team for Syringomyelia and Chiari should be led by both a primary care physician, and a neurosurgeon who has successfully treated patients for Syringomyelia, Chiari, and their complications using a multidisciplinary approach to provide ongoing preventative care for our community. We also support the availability of minimally invasive treatment options when possible to decrease risks, complications, and to improve patient long term outcomes.

Ruling year info

2015

RN, President, Executive Director

Mrs. Beth A Nguyen

Co-founder

Ty Van Nguyen

Main address

PO Box 491975

Lawrenceville, GA 30049 USA

Show more contact info

Formerly known as

Worldwide Syringomyelia Task Force Inc.

EIN

47-1943859

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Alliance/Advocacy Organizations (B01)

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

Currently there is a wide gap that exists between current research findings and updated education delivery to both public and multiple disciplines of medical professionals as it pertains to Syringomyelia, Chiari, Syringobulbia and the complications that can accompany them. Our mission is to provide updated education to all medical disciplines beginning with pediatrics and primary care expanding to all specialists to improve direct care delivery to the patient and their families using a patient-centered approach. We spearheaded this process by developing multidisciplinary advocacy models of care, educational videos, posters, and free educational appointments provided for free to our members and all healthcare professionals. Resources on our website are accessible to everyone. Our mission is education to improve care in our community developed and led by nurses and healthcare professionals in a professional peer to peer manner.

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?

SPECIFICS OF SYRINGOMYELIA and CHIARI PROJECT

This project focuses on taking a new look at the specifics of SM, Chiari, and the organs/body systems they affect over 10 years. The systems include neurological, pulmonary, cardiovascular, endocrine, reproductive, genitourinary, gastrointestinal, and psychological systems. We are looking further into spinal cord and spinal nerve injury and the systems of the body.

Population(s) Served

We are in our final phase of planning for the launch of our first collaborative HIPPA compliant Syringomyelia and Chiari registry for men, women, and children. The purpose of this registry is to collect updated data on the natural history of Syringomyelia, Chiari, and their complications across the worldwide population.

Population(s) Served

This program is aimed at developing new medical treatment guidelines & models of care to introduce to the medical community in regards to Syringomyelia, Chiari, and their complications. This effort is to increase understanding and promote improved overall excellent direct medical care of the individual with SM, Chiari, and their co-existing complications.

Population(s) Served

Our dedicated team of nurses are focused on updating educational materials for the medical community and public. We are focused on educating medical professionals of all specialties about these diseases in order to improve continuity of care and improved outcomes for men, women, and children with Syringomyelia and Chiari. We will focus on teaching as they relate to each discipline to aid in understanding relevant tools that can aid ongoing care and empower healthcare professionals.

Population(s) Served

1. Free Appointments to provide relevant supportive resources to empower members and individuals wanting to learn more about Syringomyelia and Chiari.

2. Phone conference calls with healthcare professionals to provide resources and educational tools.

3. Provide resource toolkit providing access to our partners including free flight services, free application for disability dog services, caregiving services, genetic testing, and support services including advocacy with ongoing educational outreach to schools and medical facilities including hospitals and outlying clnics.

Population(s) Served

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2017

HON Certified Website 2019

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 publications identifying sector best practices

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

Syringomyelia, Chiari and Multidisciplinary Education Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We have had published interviews and videos with Gwinnett Daily Post, Huffington Post, Cosmopolitan, Fox 5, Rare Disease Report, The Mighty, and NORD.

Number of sector award nominations earned by the organization

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

SYRINGOMYELIA & CHIARI MODELS OF CARE

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Our most prestigious award was NORD Rare Impact 2017 in Washington DC. Global Genes acknowledged our nonprofit for patient advocacy and impact two years in a row.

Total number of organization members

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

Syringomyelia, Chiari and Multidisciplinary Education Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our membership has expanded each year as we continue with our educational appointments and outreach. We are honored to serve as an educational hub to empower patients and healthcare professionals.

Number of media partnerships developed

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

Leave None Connect One Program

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

We have strategically developed partnerships with The Mighty, Rare Disease Report, and NORD to increase our outreach and expand support for our members and families.

Number of staff members certified in subject area training

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

Syringomyelia, Chiari and Multidisciplinary Education Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Worldwide Syringomyelia & Chiari Task Force is led by physicians and nurses with compassion and expertise in the field of neurosurgery, neurology, and various disciplines of healthcare.

Number of online groups served

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

Syringomyelia, Chiari and Multidisciplinary Education Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We provide three 24 hour online support groups moderated by nurses and senior volunteer WSCTF staff to provide education, resources, and support. https://www.wstfcure.org/member-support-groups.html

Total number of volunteer hours contributed to the organization

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

WSCTF volunteers attend annual Rare Disease Day tabling event, assist in administration of online support groups, help create educational posters, and assist with educational appointments.

Number of briefings or presentations held

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

Syringomyelia, Chiari and Multidisciplinary Education Program

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Targeted educational appointments, educational videos and targeted vetted resources shared online or during meetings with medical professionals.

Number of volunteer management professionals trained

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

Syringomyelia, Chiari and Multidisciplinary Education Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We currently have 5 trained volunteer professionals to admin in support groups, help with educational outreach, and provide resources during appointments.

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.

Worldwide Syringomyelia & Chiari Task Force Inc. is a 501c3 organization providing a voice for men, women, children, and canines who suffer in silence. We advocate for all who bravely battle Syringomyelia, Chiari, and the complications that co-exist with them. Our mission is to educate the world about Syringomyelia, Syringobulbia, Chiari, and their complications. Our organization is led by active nurses and physicians to bridge the gap between current research and updated education to deliver updated education to the public and all medical disciplines beginning with primary care. We would like to improve direct medical care delivery through implementation of effective advocacy tools and peer to peer advocacy in medicine to improve the quality of life for men, women, and children worldwide! The ultimate goal is to define specificity to these disease processes in order to improve care and outcomes which will result in decreased morbidity/mortality and improved quality of life! We will accomplish our goal of education through our programs including the launch of our worldwide registry, free peer to peer appointments, educational posters and videos, 24 hour online support groups for member, caregivers, and parents, and specifics of Syringomyelia and co-existing complications project for outreach into the communities we serve. Our goal is to measure improvement in direct medical care by implementation of awareness programs in healthcare, educational inservices with healthcare professionals, registry participation to monitor day to day challenges of the disease processes and symptoms among our members to aid understanding in disease, and ongoing development of tools to increase understanding about spinal cord and spinal nerve injury in our community as well. Our goal is to develop excellent standards of care for our community to aid healthcare professionals in excellent care practicies and preventative care to improve patient outcomes and help save lives! We are partnered with several organizations to reach out to healthcare professionals, other nonprofits, members, and public including NORD, The Mighty, and Rare Disease Report. In this manner we have a larger voice to make a difference!

We strongly advocate for collaboration of all specialties to care for individuals with Syringomyelia, Syringobulbia, Chiari, and their complications. We do this through peer to peer medical professional inservices to physicians and nurses. We provide training sessions for medical professionals as well to learn more about Syringomyelia and Chiari. We have developed videos, posters and media to use as teaching tools. In addition, we are working on increasing understanding about the need for educational programs in schools and medical schools to increase understanding about SM, Chiari, and their complications. We are spearheading work on the first medical treatment protocols for Syringomyelia and Chiari to improve direct patient care! We are working on the launch of the first International HIPAA compliant Syringomyelia and Chiari worldwide Registry for children and adults to collect up to date data on these diseases worldwide to increase understanding of how they affect daily life to increase understanding for public and healthcare professionals! We are also working on the Specifics of Syringomyelia and it's co-existing complications project in order to further specify the disease to apply it in the practical setting by exploring symptoms linked to spinal cord and spinal nerve injury in our population. We are reviewing new minimally invasive approaches to therapy to reduce recovery times and improve patient outcomes in the direct care setting. We author medical publications to reach medical professionals through our partnerships with Rare Disease Report and NORD. We author articles for the public through our partnership with The Mighty. We utlize patient-centered approaches in all that we do because we care about the well being of the men, women, and children who are affected.

We will broadcast live presentations and videos on demand on our website, You tube, Facebook, Twitter, via NORD, via Rare Disease Report, and via The Mighty to help educate individuals all over the world! We have partnerships with two media channels....one broadcasts to millions of medical professionals...another broadcasts to millions of patients. Our physicians are actively working on presentations & models of care. We are going to present protocols to the medical community based on research and updated data in 2018. We also have exciting new educational tools to benefit everyone! We will provide direct resources and educational links to individuals who are battling Syringomyelia, Syringobulbia, Chiari, and their complications by offering free appointments, 24 hour online support groups moderated by nurses, and connecting them to additional free resources for travel assistance, flight assistance, information on how to apply for a disability canine, member publication opportunities, educational video production to empower the patient voice, and more! We broadcast stories of hope on our website from our members and healthcare professionals to strengthen and empower our community.

Our organization has now passed proclamations in over 30 of the 50 states recognizing Syringomyelia as a disease. It emphasizes the importance of having a medical treatment protocol and recognition of spinal cord and spinal nerve injury and complications with SM and Chiari to increase understanding in medicine. In addition the proclamations designate the month of May as Syringomyelia Disease Awareness Month.

We have two online petitions advocating for improved healthcare education for SM and Chiari with over 10,000 signatures. Our medical board is growing. We were awarded the first worldwide registry for SM and Chiari through our partnership with NORD to support education and research; we are close to launching. We attended and spoke on behalf of patients with SM and Chiari at the Georgia Captol for 2018 Rare Disease Day. We spoke at Emory University in 2017 about Syringomyelia and Chiari to a group of medical professionals. We were invited to the CDC to speak about the importance of recognition of SM and Chiari in medicine. Our Executive Director was awarded the 2017 NORD Rare Impact Award. Our executive director published a book 2018 titled Beyond Syringomyelia to increase understanding and it has a 5 star rating on Amazon...100 percent of the book sales are donated back to the nonprofit to support education. We have conducted numerous interviews with Fox 5, Cosmopolitan, Huffington Post, and Gwinnett Daily Post to increase awareness about SM, Chiari, and their complications. We are working on increasing understanding about spinal cord and spinal nerve injury as it relates to our diseases, educational outreach to healthcare professionals, development of additional educational videos and posters, and launching a video production project to capture the day to day struggles faced by our members who would like to share their story to aid in public and healthcare education. We continue to strive for excellence in patient centered approaches with a professional approach to multidisciplinary healthcare professional education.

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?

    Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

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

    To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We are working on developing targeted packets of educational materials that are accessible and easy to download addressing some of the most common questions that arise in our community.

  • With whom is the organization sharing feedback?

    The people we serve, 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, We don’t have the right technology to collect and aggregate feedback efficiently,

Financials

Worldwide Syringomyelia & Chiari Task Force 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
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Worldwide Syringomyelia & Chiari Task Force Inc.

Board of directors
as of 4/15/2020
SOURCE: Self-reported by organization
Board co-chair

Mrs. Joanne Bolivar

Worldwide Syringomyelia & Chiari Task Force Inc.

Term: 2014 -


Board co-chair

Ms. Emily Claxton

Worldwide Syringomyelia & Chiari Task Force Inc.

Term: 2016 -

Lisa Johnson

Worldwide Syringomyelia & Chiari Task Force Inc.

Deborah Barton

Worldwide Syringomyelia & Chiari Task Force Inc.

Lisa Raman

Worldwide Syringomyelia & Chiari Task Force

Barbara Mclean

Worldwide Syringomyelia & Chiari Task Force

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 02/03/2020

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
White/Caucasian/European
Gender identity
Female
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
Asian American/Pacific Islanders/Asian
Gender identity
Male
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/03/2020

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 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • 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.