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ROCHESTER SPINAL ASSOCIATION
ROCHESTER, NY · EIN 223041847 · Form 990EZ · FY2024 · Small ($100K-$1M) · rochesterspinalassociation.org
revenue
$179K
expenses
$231K
net assets
$184K
employees
—
program ratio
60%
mission · from form 990

THE ROCHESTER SPINAL ASSOCIATION IS DEDICATED TO ENHANCING THE QUALITY OF LIFE OF ALL PEOPLE LIVING WITH SPINAL CORD DISABILITY.

profile · synthesized from sources

Rochester Spinal Association supports individuals living with spinal cord injuries in the Greater Rochester, NY area. The organization provides service coordination, peer support, and case management to help people access housing, transportation, medical care, and employment. It also runs specialized programs for survivors of gun violence and promotes community reintegration through recreation and social activities.

irs program accomplishments · form 990 part iii · fy2022

What they reported doing

  1. #1 primary $43K
    ROCHESTER SPINAL ASSOCIATION PROVIDES SERVICE COORDINATION SERVICES TO INDIVIDUALS WITH SPINAL CORD INJURIES. THESE SERVICES INCLUDE, BUT ARE NOT LIMITED TO, ASSISTANCE APPLYING FOR AND SECURING ACCESSIBLE HOUSING; ASSISTANCE APPLYING FOR TRANSPORTATION SERVICES; ASSISTANCE TO ENSURE THE INDIVIDUAL IS RECEIVING ENTITLEMENT PROGRAMS AND OTHER BENEFITS; ASSISTANCE COORDINATING MEDICAL FOLLOW-UP VISITS; ASSISTANCE FINDING ENJOYABLE RECREATION; AND ASSISTANCE SEEKING EMPLOYMENT AND EMPLOYMENT SERVICES AS DESIRED. RSA HAS ONE FULL-TIME SERVICE COORDINATOR POSITION.
  2. #2 $15K
    ROCHESTER SPINAL ASSOCIATION INITIATED A ONE OF A KIND, NATIONWIDE SOCIAL/SUPPORT GROUP FOR INDIVIDUALS WHO HAVE SPINAL CORD INJURIES AS A RESULT OF GUN VIOLENCE. SINCE ITS INCEPTION, OVER 60 PEOPLE HAVE PARTICIPATED, FROM 15 DIFFERENT STATES. RSA HAS CONTRACTED TWO INDIVIDUALS TO HOST THESE MEETINGS VIA THE ZOOM PLATFORM.
named programs · 3 · from sources

What they call their work

Gun Violence Survivors Social/Support Group
Nationwide virtual support group via Zoom for individuals with spinal cord injuries resulting from gun violence, hosted by trained facilitators and peer mentors.
Peer Support Program
Connects newly injured individuals with trained peer mentors who provide guidance, emotional support, and lived-experience insights during recovery and reintegration.
Service Coordination Services
Provides assistance with accessible housing, transportation, benefits enrollment, medical follow-up, recreation, and employment services for individuals with spinal cord injuries.
activities · 6 groups

What they do

  • Brain Injury Support & Rehabilitation 4 activities
    • Delivers service coordination and case management
      Provides case management, healthcare coordination, and service coordination for individuals with spinal cord injuries, including assistance with accessible housing, transportation, benefits enrollment, medical follow-up, employment, and recreation services, especially for those with complex medical and psychological needs.
    • Hosts support groups and peer connection programs
      Organizes monthly in-person and nightly virtual support meetings for individuals with spinal cord injuries and disorders, including specialized groups for survivors of gun violence, to share experiences and reduce social isolation. These include peer-led discussions and networking opportunities.
    • Provides access to resources and information
      Maintains a comprehensive list of products and services for individuals with spinal cord disabilities and delivers information, advocacy, and educational resources to over 150 individuals annually to help navigate healthcare and community systems.
    • Provides peer mentoring and support services
      Offers peer support and mentorship to individuals with spinal cord injuries, particularly newly injured teens and young adults, to help them adjust and improve quality of life through lived-experience guidance.
  • Adaptive Sports Programs 2 activities
    • Facilitates recreational and sports programs
      Co-founds and leads the WNY Wreckers, Western New York's only wheelchair rugby team, and organizes sports and recreational activities as part of community engagement and wellness programming for individuals with spinal cord injuries.
    • Organizes social engagement activities
      Hosts seasonal social parties and other informal gatherings to foster peer connections and reduce isolation among individuals with spinal cord injuries in a relaxed environment.
  • Disability Rights Advocacy & Self-Advocacy Empowerment 1 activity
    • Advocates for disability rights
      Engages in advocacy efforts to expand rights and access for people with disabilities at local, state, and national levels.
  • Charitable Grantmaking to Specific Causes 1 activity
    • Funds adaptive equipment through grants
      Awards grants of up to $1,500 to individuals with financial need to purchase adaptive or medical equipment not covered by insurance, having provided at least 70 such grants.
  • Community Health Fairs and Screenings 1 activity
    • Organizes health fairs and educational events
      Hosts an annual Spinal Cord Injury Health Fair in collaboration with the University of Rochester Medical Center, featuring expert presentations, panel discussions, vendor engagement, on-site health checks, wheelchair-accessible weighing, private consultations with sexual health specialists, FES bike demonstrations, and meals for attendees.
  • Distribution of PPE and Crisis Supplies 1 activity
    • Provides emergency relief and essential supplies
      Distributed Covid-19 financial relief grants to 83 individuals and secured and distributed PPE and sanitizer to community members during public health emergencies.
financials · form 990EZ · fy2024
revenue
Total revenue$179K
Contributions & grants$154K86%
Program service revenue$20K11%
Investment income——
Other revenue$4K
expenses
Total expenses$231K
Program expenses60%
Admin / overhead40%
Fundraising0%
Salaries & benefits$78K
Grants paid out$13K
Largest expense lineProfessional Fees
balance sheet
Total assets$184K
Cash$199K
Investments$0
Liabilities$0
Net assets$184K
Liquid reserves10.3 mo
4 years on record · 2020–2024 · YoY revenue -9.7%
leadership · form 990 part vii · fy2024

Who runs it

board members · 9
  • CONNOR HERBST — BOARD MEMBER
  • EILEEN HURLEY — BOARD MEMBER
  • JAMES HENRY — BOARD MEMBER
  • JEAN NICKELS — BOARD MEMBER
  • KAITLIN PASHINA — BOARD MEMBER
  • LINDA RIEK — BOARD MEMBER
  • NICOLE NABORS — BOARD MEMBER
  • PORCHE POWELL — BOARD MEMBER
  • SCOTT FRAIL — BOARD MEMBER
relationships · 25

Who they work with

  • ALS Association Partner — Laura Pelow worked for ten years as a case manager at the ALS Association, reflecting a prior professional and service delivery connection.
  • Amsterdam News Partner — Featured in Amsterdam News series on housing barriers for gun violence survivors.
  • Anthony Jordan Health Center Partner — Rut Gonzalez served as a Health Homes Care Manager at the Anthony Jordan Health Center, supporting Medicaid clients with complex needs.
  • Canandaigua VA Medical Center Partner — Collaborates on provision of VA health care services, including shared clinic locations and service coordination.
  • Center for Disability Rights Partner — Chris Hilderbrant previously held leadership roles at the Center for Disability Rights, indicating a professional and advocacy connection.
  • Center for Disability Rights Partner — Chris Hilderbrant previously worked in multiple roles at the Center for Disability Rights, indicating a professional and likely collaborative relationship.
  • Common Ground Health Partner — Chris Hilderbrant served as chief operating officer at Common Ground Health, indicating a prior institutional affiliation.
  • Common Ground Health Partner — Chris Hilderbrant served as chief operating officer at Common Ground Health, suggesting an institutional partnership or close affiliation.
  • Democrat and Chronicle Partner — Subject of an opinion column in the Democrat and Chronicle about a summer barbecue for gun violence survivors.
  • Greater Rochester Health Foundation Funder — Funded the hiring of social work staff to provide service coordination for individuals with spinal cord injuries due to gun violence.
  • Ibero American Action League Partner — Rut Gonzalez worked with the Ibero American Action League supporting families involved with Child Support Services.
  • Monroe Community College Partner — Chris Hilderbrant taught as an adjunct faculty member, indicating an educational partnership.
  • New Mobility Partner — Collaborates to provide features, columns, blogs, and podcasts for wheelchair users.
  • ONWARD Medical Partner — Collaborates with ONWARD Medical to present information on ARC-EX therapy for spinal cord injury.
  • Rochester Area Community Foundation Funder — Provided a small grant to support national expansion of the social/support group for gun violence survivors with spinal cord injuries.
  • Rochester Calkins VA Clinic Partner — Provides health care services in collaboration with the Rochester Spinal Association at the Calkins Road location.
  • Rochester Sexual Wellness Center Partner — Provides access to sexual health expertise through private consultations at the annual health fair.
  • Spectrum News Partner — Featured in Spectrum News coverage on support for paralyzed gunshot victims.
  • Strong Memorial Hospital Partner — Collaborates with medical staff and units at Strong Memorial Hospital to support individuals with spinal cord injuries.
  • The New York Times Partner — Profiled in The New York Times article on support groups for gun violence survivors.
  • United Spinal Association Network — Participates as an affiliated chapter in the United Spinal Association network, engaging in national leadership meetings and shared outreach goals.
  • University of Rochester Medical Center Partner — Collaborates with URMC through shared personnel and likely joint programming in spinal cord injury care and rehabilitation.
  • University of Rochester Medical Center Partner — Works with clinicians and service lines at URMC, particularly in Physical Medicine and Rehabilitation, to support spinal cord injury care.
  • University of Rochester Medical Center’s Physical Medicine & Rehabilitation Partner — Collaborates with the Rochester Spinal Association to co-host the annual Spinal Cord Injury Health Fair.
  • Zoom Partner — Uses Zoom platform to host virtual support group meetings for individuals with spinal cord injuries resulting from gun violence.
strategies · 3

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Addressing Social Determinants of Health
    methodology: social_determinants_of_health
    By integrating attention to poverty, housing, systemic racism, and health literacy into its support framework, the organization improves health equity and long-term outcomes for spinal cord injury survivors because these structural factors significantly influence access to care and quality of life.
  • Holistic Wellness Integration
    methodology: holistic_wellness_integration
    By combining health education, clinical services, peer networking, and community resources in integrated formats like health fairs, the organization enhances wellness outcomes because multifaceted, co-located services increase accessibility and address interdependent needs simultaneously.
  • Peer-Led Support Model
    methodology: peer_led_support
    By connecting individuals with spinal cord injuries to peers who have lived experience, the organization fosters emotional support, resilience, and sustained engagement because shared experience builds trust, reduces isolation, and models successful adaptation to disability.