Health—General & Rehabilitative

More Than Walking Incorporated

Sharing The Path To Independence After Spinal Cord Injury

Bridgeport, CT

Mission

Our mission is to share the path to independent living after spinal cord injury worldwide by recruiting peer mentors and therapists to film stories and technique demonstrations on the path to independence. We share these videos through an online course to newly injured patients, whom we then connect to peers in their own communities and empower to share their own experiences with the world.

Ruling Year

2018

Co-CEO & President

Jonathan Sigworth

Co-CEO & Secretary

Jessica Bello Capote

Main Address

333 State St Apt 205

Bridgeport, CT 06604 USA

Keywords

patient education, advocacy, video, film, community, peer mentoring

EIN

82-3271603

 Number

4248134634

Cause Area (NTEE Code)

Health Support Services (E60)

IRS Filing Requirement

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

Social Media

Programs + Results

What we aim to solve New!

Every year 500,000 people suffer a spinal cord injury (SCI) worldwide (WHO). Most lose the ability to walk, control bowel & bladder, and engage with society. They gain crushing social stigma, financial hardship, nerve pain, and depression. Patients must relearn how to use available movement for the most basic tasks like getting up from bed or speaking with a ventilator in order to pursue independence. In the US, patients may receive specialized therapy for an average 34 days (NSCISC 2018), which is not enough to face the inaccessibility and isolation outside the hospital. In India and Colombia, patients often do not have specialized therapy or independent living as a goal due to lack of awareness among medical providers and access to assistive technologies. Providers cannot intervene outside the hospital and patients everywhere rarely find peer mentors during hospitalization due to mentor unavailability, restrictive hospital policies, or a patient’s emotional state.

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

Spinal Cord Injury Patient Education Video Course

Where we workNew!

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

Number of people with disabilities who become peer mentors and share their story and independence skills on film.

TOTALS BY YEAR
Population(s) served

People with physical disabilities

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 and haven't they accomplished so far?

We are creating a massive open online video course to connect SCI patients to community, educate them on independence skills, and empower them to share what they learn with the world. Patients will understand what they need to learn to maximize independence and to find mentors, adaptive recreation, medical suppliers, and existing support programs in their community. Improved independence and community reintegration of patients leads to employment and reduced costs ­ 73% of SCI survivors in US remain unemployed 10 years after injury, costing over $1 million in the first year and $50,000 ­ $200,000 each year thereafter (NSCISC 2018). Regardless of experience with SCI, therapists will better understand the perspective of their patients, arrange for peer mentor visits, and communicate therapy goals, mobility strategies, and community resources to patients and caregivers. Physical & Occupational Therapy, Nursing, and medical students will understand the diversity within SCI populations and

We do this regionally by recording stories of peer mentors of every SCI type from adaptive sports teams, editing their demonstration videos of 16 activities of independent living, and distributing this to SCI­ treating hospitals as a patient education course. Demonstrations related to bed mobility, sitting, transfers, wheelchair skills, standing, and walking are accompanied by a therapist analysis video that breaks down each activity and explains key muscles, precautions, and progression strategies. As SCI viewers learn new skills, they can become mentors too and submit their own demonstrations. A crowd­sourced global resource map in the course allows mentors, medical professionals, advocacy and recreation groups, foundations, and medical companies to recommend community resources to the newly injured.

Our services are unique in that we are connecting course users to all available regional resources that they otherwise may not find. Our competitors ­ Spinalpedia, AbleThrive, United Spinal, SCIU, and others ­may provide mentoring, demonstration videos, community support, and patient education, but they fail to have a global strategy for reaching the majority and most isolated of SCI patients. We provide video production assistance for community members and patients to become peer mentors and share their experiences. We incorporate physical and occupational therapy insight alongside regionally specific mentor demonstrations to facilitate patient education in any context. We structure peer mentor and therapy independence strategies in a course that patients can easily follow and contribute to with their own insight. Moreover, while our course is online, it can easily be downloaded and transferred via USB, DVD, CD, or smartphone to any patient or provider.

Patient users can demonstrate their progress towards independence using the Functional Independence Measure (FIM) tool intermittently, and by submitting their own skill videos. Quarterly surveys of participants measure the degree of community reintegration, which will also help us to identify and address local barriers through partnered organizations. Student and therapist user surveys will track degrees of raised awareness and confidence in treating SCI. Success is impacting every country.

We are completing a pilot course for 1 injury type and have 20 mentors in the US, 1 in India, 1 in Colombia, with predicted yearly growth of 120+ mentors. In 2019, we will include analysis videos for more SCI types, with PT & OT professors from Quinnipiac and Sacred Heart University as curriculum editors and their students as reviewers. We will solicit sponsorships from local and national medical companies looking to reach patients, and from insurance companies to reduce regional SCI costs. By the end of 2020, we hope to run a full course pilot with the Spaulding New England Regional Spinal Cord Injury Center (SNERSCIC) with sites in CT and MA. As a SCI Model System, SNERSCIC will help us swiftly expand our national reach among hospitals, as well as acquire medical company sponsors interested in emerging markets in India, Colombia, and other countries.

External Reviews

Financials

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Operations

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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

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

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

We do not display sexual orientation information for organizations with fewer than 15 staff.

Disability

We do not display disability information for organizations with fewer than 15 staff.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity