American Syringomyelia Alliance Project, Inc.

Research, Education and Support

aka American Syringomyelia & Chiari Alliance Project, Inc.   |   Longview, TX   |  www.ASAP.org

Mission

ASAP's mission: "to improve the lives of persons affected by Syringomyelia, Chiari Malformation and related disorders while we find the cure."

Notes from the nonprofit

ASAP holds an annual conference each July in a different geographical location to provide education and support. Volunteers hold support group meetings in various locations and offer support through our social media sites and message board.

Ruling year info

1989

President

Mr Eric J Berning

Executive Director

Mrs Patrice R Schaublin

Main address

PO Box 1586

Longview, TX 75606 USA

Show more contact info

EIN

75-2245195

NTEE code info

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (P01)

Alliance/Advocacy Organizations (Y01)

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

ASAP was founded in order to provide support and educational materials to those diagnosed with Chiari and/or syringomyelia. Through our website we reach over 8,000 individuals each month. Our newsletter is distributed to over 10,000 and our social media pages viewed by thousands more. Through our website and YouTube channel we share videos of the top specialist in the world sharing information about Syringomyelia and Chiari malformation. These videos educate both the layman and medical persons. We create support through social media, education through lectures and fund research to find answers.

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?

ASAP's Chiari & Syringomyelia Conference

ASAP holds an Annual Medical Conference, which allows its members to receive the latest information from most of the world's leading authorities on CM/SM. The conference is held in different geographic areas each year to allow members who are not able to travel long distances to attend the conference which is held in their area. Unfortunately, CM/SM causes so much damage and pain that members are often not able to afford attending even the conferences in their area. It is our intention to dedicate fundraising resources to finding sponsors for ten(10) hotel rooms which ASAP will assign to qualifying individuals or families at the Annual Medical Conferences.

Population(s) Served
Adults

For almost 30 years ASAP has been disseminating information. With advancements in technology or local support groups have expanded to include social media, We reach thousands of people each day through our extensive website, ASAP.org, providing educational materials presented by the experts.

Population(s) Served
Adults

Research Grant Programs: Research grant applications are invited from investigators studying clinical and basic science hypotheses relevant to the identification, management, treatment, cure, or determination of pathogenesis of syringomyelia and/or Chiari malformation. We are committed to putting research dollars to work finding answers to questions about Chiari and syringomyelia.

Population(s) Served
People with diseases and illnesses

Through a variety of venues we promote awareness of disorders/diseases once considered extremely rare. Through our efforts medical professional are more aware of their existence and the length of time from symptoms to diagnosis has greatly reduced in recent years.

Population(s) Served
Adults

Where we work

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.

increasing public awareness of the existence of the disorder and its devastating effects; financially supporting research efforts and raising funds to find all causes, to develop new treatments, and to improve existing treatments; coordinating the efforts of organizations working towards improving the lives of people with syringomyelia and/or Chiari.

Funding new research grants; organizing a medical conference with specialist in the neurosurgery, pain management, neurological fields who treat the syringomyelia and Chiari population; creating a user friendly website with verified information.

A dedicated Board of Directors who volunteer their time and expertise to govern as well as provide hands-on guidance to volunteers. A dedicated staff who maintains programs, provides support and works together with the various Boards to further the organizations goals.

The American Syringomyelia & Chiari Alliance Project, has provided support, funded research and distributed educational materials for over 25 years. We have grown from a grass-roots organization to one that is recognized as a leading authority in the field of Chiari and syringomyelia. Through our website and social media pages we reach hundreds of thousands looking for information and understanding.

Financials

American Syringomyelia Alliance Project, 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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American Syringomyelia Alliance Project, Inc.

Board of directors
as of 4/12/2021
SOURCE: Self-reported by organization
Board co-chair

Mr Eric Berning

no affiliation

Term: 2018 - 2021


Board co-chair

Mr John Caemmerer

n/a

Term: 2020 - 2023

Robert Keating

Children's National Medical Center

John Caemmerer

No Affliation

Annie Chapman

No Affliation

Eric Berning

no affilliation

Paolo Bolognese

Chiari Neurosurgical Center NSPC

Gerald Grant

Stanford Medical School

Richard Simon

no affiliation

Molly Lichtenstein

no affiliation

Michele Raye

no affiliation

Brian Dlouhy, MD

University of Iowa

Jeni Adair

no affiliation

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 ? 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? 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 03/22/2021

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
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability