Disease, Disorders, Medical Disciplines

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

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 nearly 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

1990

President/CEO

Mr. Jerry M. Dawson II

Main Address

4 North Blount Street Suite 200

Raleigh, NC 27601 USA

Keywords

NCALS, North Carolina ALS, ALS, amyotrophic, Lou Gehrig's disease, ALSA, The ALS Association, ALS Association, Catfish, Hunter

EIN

56-1609591

 Number

3465704948

Cause Area (NTEE Code)

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.

Sign in or create an account to view Form(s) 990 for 2017, 2017 and 2016.
Register now

Social Media

Programs + Results

What we aim to solve New!

Nearly 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 nearly 800 people living with ALS each year by supporting the multidisciplinary ALS clinics in the state, loaning medical equipment at no cost, providing financial assistance grants, operating support groups and funding ALS research.

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

Loaner Equipment Program

Chapter Grant

Support Groups

Multi-Disciplinary Clinics

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 ALS patients seen at multidisciplinary clinics

TOTALS BY YEAR
Population(s) served

People with diseases and illnesses

Related program

Multi-Disciplinary Clinics

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 support group attendees

TOTALS BY YEAR
Population(s) served

Caregivers,

People with diseases and illnesses

Related program

Support Groups

Context notes

The ALS Association North Carolina Chapter hosts 15 monthly support groups administered by healthcare professionals throughout the state.

Number of wheelchairs and rollator walkers loaned to patients

TOTALS BY YEAR
Population(s) served

People with diseases and illnesses

Related program

Loaner Equipment Program

Context notes

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

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?

• 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.

We have completed a strategic implementation plan through the end of 2020. We have also completed a detailed operational plan with specific steps to achieve our goals. Some of the action items are driven by staff and others are driven by the Board of Directors. The operational plan is updated in real time and regular updates are shared with the Governance Committee and Board of Directors. Each goal and corresponding objectives and tactics are marked as (1) Not Current Year (2) Behind Schedule (3) In Progress (4) Complete.

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 maintains strategic partnerships with hospitals throughout NC. • The Chapter supports all ALS multidisciplinary clinics in NC including an ALS tele-health program to help people who cannot travel to a multidisciplinary ALS clinic. • The Chapter has a passionate and supportive donor and volunteer base. • The Chapter maintains a strong commitment to staff by providing fair, industry bench-marked wages and benefits. • The Chapter is financially sound.

Every tactic included in our operational plan is tied to specific metrics. The plan is updated in real time and regular updates are shared with the Governance Committee and Board of Directors to measure progress.

Our strategic plan extends through 2020. The following is a sampling of accomplishments: • We have a mature Board which follows governance best practices • Board consistently achieves 100% participation in personal giving • Committees are actively engaged with staff • Implemented strategies for increasing board membership and diversity • Board follows Chapter policy for "Ongoing Recruitment of Board Members • Plan implemented to ensure proper orientation of new board members and staff • Medical Advisory Council created to provide a forum for ALS neurologists and community care providers to share best practices, which supports consistent care. • On track to meet revenue objectives • Approved all eligible patient grant requests to date • Supports all ALS clinics in NC • Supports an ALS tele-health clinic • Completed Chapter Standards audit • Independent financial audit and annual report completed in a timely manner • Started an Ambassador Program to extend Chapter reach

External Reviews

Financials

The ALS Association North Carolina Chapter

Fiscal year: Feb 01 - Jan 31

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2017 and 2016
A Pro report is also available for this organization for $125.
Click here to view a Sample Report.

Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2017 and 2016
A Pro report is also available for this organization for $125.
Click here to see what's included.

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

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

Race & Ethnicity

This organization reports that it does not collect this information.

Sexual Orientation

This organization reports that it does not collect this information.

Disability

This organization reports that it does not collect this information.

Diversity Strategies

check_circle
We track retention of staff, board, and volunteers across demographic categories
close
We track income levels of staff, senior staff, and board across demographic categories
check_circle
We track the age of staff, senior staff, and board
close
We track the diversity of vendors (e.g., consultants, professional service firms)
close
We have a diversity committee in place
close
We have a diversity manager in place
check_circle
We have a diversity plan
check_circle
We use other methods to support diversity
Diversity notes from the nonprofit
Diversity is vital to every organization and improving diversity is included in our strategic plan. Our Governance Committee Charter includes the responsibility to develop and oversee a plan to enhance ethnic and gender board diversity. On December 5, 2017, the Recruitment of New Board Members Policy was approved by the Board of Directors. This policy includes regular review of our board matrix with diversity in mind to identify candidates who have the desired skill set, passion and availability to serve. All current members have a personal connection to ALS (36% through a close friend, 7% through a significant other, 57% through a family member). Two were full-time caregivers. One is living with ALS and was a caregiver to her mother.