American Syringomyelia & Chiari Alliance Project

What American Syringomyelia & Chiari Alliance Project does

The American Syringomyelia & Chiari Alliance Project (ASAP) is a 501(c)(3) nonprofit patient advocacy and research organization founded in 1988 and headquartered in Longview, Texas. It serves individuals affected by Chiari malformation and syringomyelia, along with their families, caregivers, and the medical professionals who treat them. Its core activities are funding peer-reviewed research grants and fellowships, producing patient and clinician education resources, and operating an annual national conference that convenes medical experts with patients.

ASAP does not develop technology products or maintain proprietary software platforms; its deliverables are research grants, educational content (including an on-demand conference video gallery, patient guides, and a glossary), support communities, and a small e-commerce line of awareness merchandise (bracelets, frisbees, relaxation CDs). Its technology footprint is limited to a content website (asap.org), email newsletter, social media channels, a YouTube library of conference recordings, and online membership and donation processing. The organization funds external research at academic medical centers rather than operating its own labs.

Revenue is generated primarily through individual charitable donations, recurring membership dues, merchandise sales, and tiered conference registration fees ($60-$425 per attendee, with medical professionals attending free). Grants and fellowships are funded through these donations and dedicated memorial funds such as the Marcy Speer Research Memorial Fund. Distribution is community-led, combining grassroots patient communities, an annual conference, workplace giving channels (United Way, matching gifts), and direct-to-patient digital outreach.

Name

American Syringomyelia & Chiari Alliance Project

Legal name

American Syringomyelia & Chiari Alliance Project

Website

https://asap.org

Company type

Private

Founded year

1988

Operating status

Operating

Headcount range

1–10 employees

Short description

The American Syringomyelia & Chiari Alliance Project (ASAP) is a 501(c)(3) nonprofit founded in 1988 that funds research, education, and support services for patients affected by Chiari malformation and syringomyelia, their families, and treating clinicians.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Support Services

NAICS

Individual and Family Services (6241), Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Patient Advocacy, Navigation & Access to Care (BPAGACAH), Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

Keywords

• Patient advocacy services
• Rare disease research
• Medical education programs
• Patient support resources
• Nonprofit health organization

Headquarters

HQ city

Longview

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: ASAP generates revenue primarily through charitable donations from individuals, families, and supporters affected by Chiari malformation and syringomyelia. The organization runs fundraising campaigns, workplace giving programs, and accepts donations designated to research funds including the Marcy Speer Research Memorial Fund.
2. Membership Dues: Annual membership fees provide ongoing support and access to member resources, newsletters, and community connection.
3. Merchandise Sales: E-commerce sales of awareness merchandise including bracelets, frisbees, and educational materials like the Breathe Relax & Heal CD. Products sold through the ASAP online store.
4. Conference Registration: Revenue from annual conference registrations with tiered pricing: Adults $175, Children $65, Family $425, Day Pass $60. Medical professionals attend free as part of educational outreach.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels7 records

Core offering

ASAP is a 501(c)(3) nonprofit that supports patients and families affected by Chiari malformation, syringomyelia, and related disorders. The organization funds research grants and fellowships, hosts an annual national conference connecting patients with medical experts, provides patient education materials and support groups, sells awareness merchandise, and runs membership programs and youth initiatives such as the Kids for a Cure Club.

Product overview

ASAP (American Syringomyelia & Chiari Alliance Project) is a nonprofit 501(c)(3) patient advocacy and research organization established in 1988. It does not offer technology products; instead, it provides patient support services including annual conferences, educational resources, research grants, fellowships, scholarships, and community support programs for individuals affected by Chiari malformation, syringomyelia, and related disorders.

Differentiator

Problem solved

Functional benefit

Products and services

• Annual ASAP National Conference Annual in-person conference (with virtual options) bringing together Chiari malformation and syringomyelia patients, families, and 20+ medical experts for lectures, support group meetings, children's programs, and networking. Registration tiers include Adult ($175), Child ($65), Family ($425), Day Pass ($60), with free registration for medical professionals.
• ASAP Membership Program Annual membership program providing ongoing support, access to member resources, newsletters, and community connection for patients, families, and supporters affected by Chiari malformation and syringomyelia. International membership available.
• Chiari and Syringomyelia Research Grants Competitive research grant program funding scientific studies on Chiari malformation and syringomyelia at academic medical centers including Duke University, Stanford University, University of Iowa, University of Utah, University of Wisconsin, and others. Over $4 million in grants have been awarded since 1988.
• Timothy M. George Fellowship Award Annual fellowship award supporting emerging researchers conducting innovative studies on Chiari malformation and syringomyelia, including ultra-high b-value diffusion weighted imaging and surgical decision-making research at institutions such as University of Utah and Children's National.
• ASAP Awareness Merchandise Online merchandise store selling Chiari and syringomyelia awareness products including glow-in-the-dark silicone bracelets (CM and SM styles, $6 for 5), ASAP folding frisbees ($3), and the Breathe Relax & Heal CD ($12) featuring deep breathing exercises and yoga techniques.
• Kids for a Cure Club Youth engagement program for children ages 5-19 affected by Chiari malformation and syringomyelia, providing age-appropriate resources, events, and fundraising opportunities to support pediatric research and build community.
• Patient Education and Reference Materials Comprehensive library of patient education resources including the Patient Reference Booklet, newly diagnosed Q&A materials, medical glossary, wellness resources, disability information, and disorder-specific guides on Chiari malformation, syringomyelia, and related conditions such as Ehlers-Danlos Syndrome.

Quantifiable outcome

• Over $4 million in research grants funded since 1988
• +2 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core, major and minor.

• Duke UniversitycoreStrategic or Co-development PartnerDuke University continues Dr. Marcy Speer's genetic research on Chiari type I malformation. ASAP funds donated to the Marcy Speer Research Memorial Fund are awarded to Duke's Center for Human Genetics. Research focuses on identifying genes involved in CM1 through genome-wide association studies (GWAS) and biobank samples collected since the 1990s.
• University of IowacoreStrategic or Co-development PartnerDr. Brian J. Dlouhy, ASAP Research Committee Chair and Medical Advisory Board member, leads Chiari malformation research at University of Iowa Hospitals & Clinics. He conducts human brain research and treats patients with craniovertebral junction disorders. Also hosts ASAP conferences.
• University of Utah / Primary Children's HospitalmajorStrategic or Co-development PartnerMultiple research grants awarded to University of Utah for Chiari malformation studies including Timothy M. George Fellowship recipients studying ultra-high b-value diffusion weighted imaging and surgical decision-making for Chiari 1 & 1.5 malformations.
• Harms Study GroupminorStrategic or Co-development PartnerMentioned in context of scoliosis treatment research. A cohort of surgeons dedicated to advancement of treatment for children and adolescents with spinal deformities, partnering with Zimmer Biomet on patient registry.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Child Neurology Foundation: A nonprofit supporting children with neurological conditions including Chiari malformation, providing education, advocacy, and research support — comparable in pediatric patient focus and CME/conference programming.
• National Organization for Rare Disorders (NORD): A large umbrella advocacy organization for rare diseases that includes Chiari and syringomyelia in its portfolio; comparable as a peer in patient advocacy, research funding, and policy engagement at broader scale.
• Spina Bifida Association: A national patient advocacy and research organization for spina bifida, including related CSF and neural tube conditions — comparable in patient support, research funding, and conference-driven engagement.
• American Neurological Association (ANA): A professional society advancing neurological research and education, including specialists who treat Chiari and syringomyelia; comparable in research and educational programming for the same physician audience.
• American Association of Neurological Surgeons (AANS): A large professional society for neurosurgeons who treat Chiari and syringomyelia patients; comparable as a stakeholder in CME, research dissemination, and clinical guideline development.

Direct peers

• Ehlers-Danlos Society: A global nonprofit for Ehlers-Danlos syndromes, frequently comorbid with Chiari malformation; ASAP has expanded into this disorder. Comparable in disease advocacy, research grants, and international membership model.
• Hydrocephalus Association: Patient advocacy and research nonprofit for hydrocephalus, a CSF-related neurological condition frequently comorbid with Chiari malformation and syringomyelia; comparable in mission, member model, and conference programming.
• Bobby Jones Chiari & Syringomyelia Foundation: A nonprofit dedicated to research, education, and patient support for Chiari malformation and syringomyelia — the most direct peer organization with overlapping mission, donor base, and research grant programs.
• Conquer Chiari: A nonprofit research and advocacy organization focused exclusively on Chiari malformation, funding research and educating patients — highly comparable in disease focus and nonprofit structure.

Regional players

• Chiari Care Center / Weill Cornell Medicine: A specialized multidisciplinary Chiari clinical and research program at a major academic medical center; comparable as a research/clinical counterpart to ASAP's grant recipients in advancing Chiari care.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/ASAPChiariSyrin
• YouTubeyoutube.com/channel/UCJHul2aTWLIjLBUuIsJSWvg
• Facebookfacebook.com/asapchiarisyringo
• LinkedInlinkedin.com/company/asapchiarisyringo

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about American Syringomyelia & Chiari Alliance Project