The ALS Association North Carolina Chapter

Everything we do supports the discovery of effective treatments and a cure for ALS.

aka ALS Association Jim "Catfish" Hunter Chapter   |   Raleigh, NC   |  www.alsnc.org

Mission

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest. The North Carolina Chapter helps more than 800 people living with ALS in North Carolina each year by supporting all of the ALS clinics throughout the state, loaning medical equipment at no cost to those who need it, and providing financial assistance grants to pay for expenses such as home modifications and in-home care. We are here to help families now and will not rest until we find a treatment and a cure!

Ruling year info

1990

President/CEO

Mr. Jerry M. Dawson II

Main address

4 North Blount Street Suite 200

Raleigh, NC 27601 USA

Show more contact info

Formerly known as

The ALS Association North Carolina Chapter

The ALS Association Carolinas Chapter

The ALS Association Jim "Catfish" Hunter Chapter

EIN

56-1609591

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

More than 800 North Carolinians are living with ALS in any given year. ALS is a progressive, neuromuscular disease that does not yet have a cure. The average life expectancy for someone with ALS is 2-5 years from diagnosis. The ALS Association is dedicated to improving the quality of life for people living with ALS while leading the fight to find a cure for the disease through research and advocacy. The ALS Association North Carolina Chapter helps more than 800 people living with ALS each year by supporting the multidisciplinary ALS clinics in the state, loaning durable medical equipment at no cost, providing financial assistance grants, operating support groups and funding ALS research.

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?

Medical Equipment Loan Program

The Medical Equipment Loan Program operated by the North Carolina Chapter houses limited durable medical equipment that is normally not covered by insurance. If other resources have been exhausted and equipment is available, the Chapter may be able to loan the needed equipment to assist pALS in daily living needs. If and when the equipment is no longer needed, it can be returned to the Chapter for use by other pALS.

Population(s) Served
People with diseases and illnesses

The North Carolina Chapter Grant Program assists families with expenses that are not traditionally covered by insurance such as Medicare, Medicaid and other assistance programs. It will cover, but is not limited to, home assistance (respite), travel costs related to ALS, home modification, auto modifications, computer access, communication devices, environmental controls and generators for invasive or non-invasive breathing assistance. Recipients may apply for and receive two grants per year for $750 each. Grants are awarded on a first come first served basis and based on available funds. First time applicants will be given priority.

Population(s) Served
People with diseases and illnesses

Prior to COVID-19 restrictions, the Chapter was maintaining seven in-person connection groups across the state and three statewide telephone connection groups for a current total of 10 groups. During the COVID-19 restrictions all connection groups have shifted to telephone and virtual meetings. Each Chapter social worker facilitates at least one group and other ALS trained non-staff social workers across the state facilitate the other monthly groups. The connection groups offer a valuable lifeline to families dealing with ALS. As the disease progresses, the person with the disease and/or their caregiver may be unable to attend in person allowing the telephone groups to provide a more practical means of reaching out for support. The Chapter provides initial training for the non-staff social workers and maintains ongoing support of the non-staff social workers as we provide them with continuing education. Chapter staff notifies all ALS families in our database of the meetings and meeting topics for the in-person group near them, as well as the statewide telephone groups. Without the coordination of support of the non-staff social workers and the existence of the Chapter staff social workers to facilitate these groups, there would be little opportunity for families to support each other and experience the comfort of knowing they are not alone.

Population(s) Served
People with diseases and illnesses
Caregivers

The Chapter financially supports all seven of the ALS clinics and centers in North Carolina where patients are taken care of by an entire team of specialists. These include: Duke ALS Clinic - Durham, Wake Forest ALS Clinic - Winston-Salem, Jim "Catfish" Hunter ALS Clinic - Greenville, Carolinas Neuromuscular/ALS-MDA Center - Charlotte, New Hanover Regional Medical Center ALS Clinic - Wilmington, UNC ALS Clinic - Chapel HIll and Salisbury VA ALS Clinic - Salisbury. The Chapter also financially supports telemedicine at the Duke and Carolinas' clinics.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of ALS patients seen at multidisciplinary clinics

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Multi-Disciplinary Clinics

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

85% of the expected ALS population in NC are registered with our Chapter. 95% of all people living with ALS who are registered with us attend one of our multidisciplinary ALS clinics.

Number of pieces of equipment loaned to patients

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Medical Equipment Loan Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The Chapter Loaner Equipment Program provides free loan, pick up and delivery of power wheelchairs; manual wheelchairs; transport wheelchairs, shower wheelchairs, hoyer lifts and rollator walkers.

Number of financial assistance grants paid out

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

Chapter Grant

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The grant program assists NC families with expenses such as in-home care & home modifications that are not traditionally covered by insurance. It changed from a quarterly to biannual program in 2017.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

• Promote the interdependence between care and research in our messaging and through our actions.
• Provide, sustain, and expand premier services to the ALS community that exceeds level four on the Pathways to Excellence matrix.
• Promote and support The ALS Association’s research initiatives, encourage all ALS clinics to engage in clinical research and encourage patients to participate in clinical trials.
• Expand and strengthen our advocacy reach and influence both nationally and locally.
• Continue to cultivate and maintain a culture of philanthropy throughout NC.
• Sustain a governance environment and practices that result in: Organizational sustainability (succession planning, fundraising); An inclusive, learning organization; Accountability, transparency and best practices; Adaptability to a changing environment
• Amplify and embody the brand promise, Everything we do supports the discovery of effective treatments and a cure for ALS, through a year round awareness strategy.

Ensure people with ALS have access to effective treatments, and cases of ALS are being prevented.
Empower people with ALS to engage with the world in the way they want.
Reduce the physical, emotional, and financial burden of living with ALS.
Ensure ALL people with ALS and their caregivers receive high quality services that benefit them.
Create a culture of accountability to ensure meaningful impacts for people with ALS.

The Chapter is in an excellent position to address the goals and strategies outlined earlier for a number of reasons:
• The Chapter is a trusted and transparent organization.
• The Chapter has a mature Board committed to solid governance practices.
• The Chapter staff has a breadth of knowledge about ALS and their particular job responsibilities as well as a deep commitment to help those with ALS.
• The Chapter will continue to cultivate and steward people with ALS, current and former caregivers and others as appropriate.
• The Chapter will seek opportunities to engage the National ALS Association to advance program, fund development and leadership development goals.
• The Chapter will work closely with Affiliated, Recognized and Certified ALS Treatment Centers to advance a fully integrated community and clinic based care model.
• The Chapter will encourage and support the ALS patient community's participation in research activities.
• The Chapter will help all stakeholder groups to understand that everything we do advances the search for an effective treatment and cure for ALS.


• Medical Advisory Council provides a forum for ALS neurologists and community care providers to share best practices, which supports consistent care.
• Financial supports and partners with all six ALS clinics in NC, including tele-health programs
• Volunteer Ambassador Program to extend Chapter reach and increase ALS awareness
• Served 798 ALS patients in 2020
• Over $2.3M in financial assistance grants direct to ALS families over the past 10 years
• Successful transitioned in-person Walk to Defeat ALS (historically provided close to 50% of total revenue) to a virtual Walk Your Way model
• Hosted an ALS Awareness Special highlighting strides in ALS advocacy, assistive technology and research updates for the NC ALS community

How we listen

SOURCE: Self-reported by organization

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

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Individuals living with ALS and their families and caregivers

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Case management notes, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    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, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Hosted an ALS Awareness Special, highlighting ALS advocacy, assistive technology and ALS research. This was in response to feedback concerning our cancellation of our annual Caregivers Conference due to Covid-19.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    It helps us make informed decisions about our current and future program decisions. Asking for specific feedback from people living with ALS and their families about their daily experiences, is a key input in creating new programs, and ensuring that our families have the most positive experience with our organization.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

The ALS Association North Carolina Chapter
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

The ALS Association North Carolina Chapter

Board of directors
as of 6/30/2021
SOURCE: Self-reported by organization
Board chair

Denise Kirkland

Wake Tech Community College

Term: 2020 -

Denise Kirkland

Wake Tech Community College

Jana Antos

Cincinnati Insurance Companies

Gray Angell

Bermuda Village/Blue Ridge Health Investors

Kathryn Foster

Hospice and Palliative Care of Greensboro

Kathleen Boyce

Girls on the Run of Gaston County

Douglas Noreen

Howard, Stallings, From, Hutson, Atkins, Angell & Davis, P.A.

Ross Sloan

Hemp Banking

Christy Hall

N2 Publishing

Beth Christina

PRA HealthSciences

John Miller

Mendix

Linda Shuford-Reeves

American Airlines

Ann White

Darvis Simms

Rob Whited

NC State

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 ? Yes
  • 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 6/30/2021,

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

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data