Health—General & Rehabilitative

The Joe Martin ALS Foundation

We Help People with ALS. You can too.

aka The Joe Martin ALS Foundation

Charlotte, NC

Mission

The Joe Martin ALS Foundation’s mission is to empower families as they face the challenge of living actively with ALS by providing home care and other services at no cost.

Ruling Year

2008

President

Neil Cottrell

Main Address

100 N Tryon St Ste 3420

Charlotte, NC 28202 USA

Keywords

joe, martin, ALS, foundation, Lou Gehrig's disease, home care, wheelchair transportation, assistive technology,

EIN

26-0163120

 Number

7771547536

Cause Area (NTEE Code)

Health Support Services (E60)

Homemaker, Home Health Aide (P44)

Transportation (Free or Subsidized) (P52)

IRS Filing Requirement

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

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Programs + Results

What we aim to solve

An ALS diagnosis is devastating. There is no cure and people with ALS (PALS) and their families do not know how to address the challenges that continue to deteriorate their quality of life. The Joe Martin ALS Foundation provides answers to caregiving questions and become a trusted friend who can help navigate ALS. As the disease progresses PALS need more help. Seemingly easy tasks such as bathing, dressing, and eating become difficult. Homecare is expensive and many families do not have insurance to cover these expenses. The foundation provides free home to help with this need. Our staff has ALS caregiving experience and teach family members the best caregiving techniques and recommend medical equipment that are suited for PALS. The foundation also provides loaner medical equipment when available. Many PALS cannot afford to purchase a wheelchair accessible van and the foundation has addressed this need by providing wheelchair accessible transportation.

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

Home Care

Wheelchair Accessible Transportation

Caregiving Workshops

Joe's Camp

Home Assessment

Where we work

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 families who report they are supported in utilizing natural supports in their communities (e.g., family, friends, neighbors, churches, colleges, recreational services)

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years),

Adults

Related program

Home Care

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context notes

We facilitate communication to our clients friends, family, and community partners to help them communicate their needs to receive help from all possible resources.

Number of families who report that service and support staff/providers are available and capable of meeting family needs

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Care

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context notes

Our numbers reflect the year by year growth of the families we serve.

Number of people provided assistive technology

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Care

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context notes

We help clients acquire assistive technology to aid in communication and loss of arm/hand strength.

Number of clients in residential care

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Care

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of eligible clients who report having access to an adequate array of services and supports

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Assessment

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Number of older adults being supported to live at home through home care, assistive technology, and/or personal support plans

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Care

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context notes

We provide home care and home assessments therefore most people we serve live at home.

Number of youth who demonstrate that they have developed coping skills

TOTALS BY YEAR
Population(s) served

K-12 (5-19 years)

Related program

Joe's Camp

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context notes

These numbers reflect our Joe's Camp program. We provide coping skills for kids who have a loved one with ALS.

Number of youth who demonstrate that they have developed a strong sense of self

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years),

K-12 (5-19 years)

Related program

Joe's Camp

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context notes

Kids who attend Joe's Camp are encouraged by their peers who are also affected by having a loved one with ALS. They learn and develop their sense of self.

Number of youth who demonstrate that they are aware of their interests and abilities

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Joe's Camp

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context notes

All children at Joe's Camp have a loved one living with ALS.

Number of adults with a source of ongoing care

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Care

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of adults with disabilities receiving sufficient social and emotional support

TOTALS BY YEAR
Population(s) served

K-12 (5-19 years),

Adolescents (13-19 years),

Adults

Related program

Home Care

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context notes

We help provide social and emotional support and reach out to their community for all possible resources.

Number of patient visits

TOTALS BY YEAR
Population(s) served

Adults

Related program

Home Care

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context notes

For home care we visit clients 2 times per week. We also provide wheelchair transportation, home assessments, loaner medical equipment, and other assistance that consist of patient/client visits.

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 they accomplished so far and what's next?

We hope to provide emotional and financial support through our services. We save families at least $5,000 per year by providing free home care. We help decrease stress by helping families understand that they can learn to be caregivers and by knowing we will be there when they have new questions and challenges as the disease progresses.

We educated families through caregiver workshops and training. This strategy provides comfort and decreases caregiver and PALS' stress. Fear is high of the unknown. Learning that they can do something to help their loved one and fight this disease is empowering. By providing free homecare services we are giving the tangible benefit of saving families several thousands of dollars.

Our caregivers all have ALS caregiving experience. They provide hands on homecare for free in PALS homes. Neil Cottrell has over 21 years of ALS caregiving experience and he does caregiving training, workshops, and support groups to assist these families. We have also recently added a camp to help kids who have a loved one with ALS.

We conduct surveys for all of our services. We also routinely ask our clients if their needs are being met and how we can improve.

We have helped over 500 families in the Charlotte area and thousands through our online resources (for example: caregiving tutorial videos). The thanks and gratitude of the families we have helped are overwhelming. Our staff has served as Pall bearers, given eulogies, and the foundation routinely receives donations from "in lieu of flowers" requests. This is due to the fact that our staff become very close to the families we serve. We help improve quality of life for PALS and their families. We hope to continue to assess and meet the needs of the ALS community through new programs like "Joe's Camp" and one day establish offices in more cities to reach more people.

How We Listen

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

Source: Self-reported by organization

the feedback loop
check_box We demonstrated a willingness to learn more by reviewing resources about feedback practice.
check_box We shared information about our current feedback practices.
How is the organization collecting feedback?
We regularly collect feedback through: electronic surveys (by email, tablet, etc.), paper surveys, focus groups or interviews (by phone or in person), case management notes.
How is the organization using feedback?
We use feedback to: to identify and remedy poor client service experiences, to identify bright spots and enhance positive service experiences, to make fundamental changes to our programs and/or operations, to inform the development of new programs/projects, to identify where we are less inclusive or equitable across demographic groups, to strengthen relationships with the people we serve.
With whom is the organization sharing feedback?
We share feedback with: the people we serve, our staff, our board, our funders, our community partners.
What challenges does the organization face when collecting feedback?
It is difficult to: it is difficult to get the people we serve to respond to requests for feedback, the people we serve tell us they find data collection burdensome.
What significant change resulted from feedback
We learned that children of those with ALS need more support and resources. There wasn't any programs for children and they need to understand they are not alone and that there are other kids in similar situations. This led to the development of our Joe's Camp program. This camp helps with the aforementioned and provides coping skills for these children as they help their families through the many challenges of ALS.

External Reviews

Financials

The Joe Martin ALS Foundation

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Operations

The people, governance practices, and partners that make the organization tick.

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FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

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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?

Yes

CEO OVERSIGHT

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

Yes

ETHICS & 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