Disease, Disorders, Medical Disciplines

Amyotrophic Lateral Sclerosis Association aka Amyotrophic Lateral Sclerosis Association, North Carolina Chapter

  • Raleigh, NC
  • www.alsnc.org

Mission Statement

Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.

The North Carolina Chapter helps more than 500 people living with ALS in North Carolina 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 wheelchair ramps, assistive technology and medication. We are here to help families now and will not rest until we find a treatment and a cure!

Main Programs

  1. Loaner Equipment Program
  2. Chapter Grant
  3. Support Groups
  4. Multi-Disciplinary Clinics
Service Areas

Self-reported

North Carolina

The entire state of North Carolina

ruling year

1990

President/CEO since 2000

Self-reported

Mr. Jerry M. Dawson II

Keywords

Self-reported

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

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Also Known As

ALS Association North Carolina Chapter

EIN

56-1609591

 Number

3465704948

Physical Address

4 North Blount Street Suite 200

Raleigh, NC 27601

Contact

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

In 2000, we served approximately 50 people living with ALS in NC and offered four support groups. Today, we serve almost 600 families and offer 15 support groups. We support all of the multidisciplinary ALS clinics in North Carolina and have recently expanded our reach by adding a telemedicine ALS clinic and ventilator-specific ALS clinic. The demand for our services continues to increase steadily. Last year, we had 950 individual patient visits and funded 651 individual grants to help families with home modifications, transportation, communication devices and many other important needs not paid for by insurance. The cost of this direct assistance to families last year was more than $338,000. Since our program began in 2004, the Chapter has funded more than 3,500 grants.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Loaner Equipment Program

The Loaner Equipment 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.

Category

Human Services

Population(s) Served

Disabled, General or Disability Unspecified

None

Budget

$5,600.00

Program 2

Chapter Grant

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.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Disabled, General or Disability Unspecified

None

Budget

$250,000.00

Program 3

Support Groups

The Chapter maintains 12 in-person support groups across the state and three statewide telephone support groups for a current total of 15 groups. 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 support 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.

Category

Human Services

Population(s) Served

Disabled, General or Disability Unspecified

None

Budget

$37,700.00

Program 4

Multi-Disciplinary Clinics

The Chapter supports all of the ALS clinics and centers in North Carolina where patients are taken care of by an entire team of specialists.

Category

Human Services

Population(s) Served

Physically Disabled nec

Adults

Budget

$225,000

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    We aim to find a treatment and cure for ALS as soon as possible and until that happens, improve the quality of ALS services for all people living with ALS and those who love and care for them.
    To accomplish this goal, other goals need to be in place:
    • Fund ALS clinics where care is provided and research is conducted
    • Broadening of the base of individuals and corporations committed to our Chapter mission
    • Diversification of Development
    • Efforts to advance public policy initiatives at the state and national level
    • Increase awareness of ALS through branding and visibility of ALS and the Chapter
    • Maintain or increase the professionalism of staff
  2. What are the organization's key strategies for making this happen?
    1. Ensure that the Chapter meets industry and national non-profit standards
    • Complete and meet ALS Association Chapter Standards on an annual basis
    • Complete guidelines for Charity Navigator and Guidestar and monitor standards
    2. Increase membership of Board of Directors
    • President, in conjunction with the Nominating Committee will work with existing board, staff and though networking opportunities to identify strong candidates for the Board from around NC.
    3. Increase Board of Directors commitment to mission through education and engagement
    • Maintain a formal training model for new board members
    • Maintain a new Board Member training PowerPoint for board members
    • Maintain and review job descriptions for board committees
    • Require all board members to make a meaningful financial commitment and participate in their local Walk to Defeat ALS.
    • Develop a strong Governance Committee to monitor board member and committee effectiveness
    • Encourage staff engagement with board members
    4. Increase focus on corporate revenue through major gifts, sponsorship opportunities, and planned giving
    • Add a Corporate and Major Gifts Officer position to Chapter staff to identify new and existing donor prospects
    • Staff and Development Committee to take advantage of networking opportunities
    • Focus on Board Corporate Recruitment chair and corporate effort campaigns within each Walk
    5. Maintain adequate staffing to prevent burnout and cover needs
    • Create a staffing plan to support future growth for the Chapter
    6. Provide career advancement opportunities as appropriate
    • Chapter leadership creates a structure for departments that allows for career growth
  3. What are the organization's capabilities for doing this?
    The Chapter is in a good position to address the goals and strategies outlined earlier for a number of reasons:
    • 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 has a passionate and supportive donor base.
    • The Chapter is a trusted and transparent organization.
    • The Chapter has a strong commitment to the staff by providing fair, industry benchmarked wages and benefits.
    • The Chapter supports all ALS multidisciplinary clinics in NC including a telemedicine and ventilator specific ALS clinic.
    • The Chapter is financially sound.
  4. How will they know if they are making progress?
    • Board Development: increase board size to 15-20 members representing diverse areas of the state.
    • Overall revenue increases by 3-5% annually
    • Care Services programs increase 3-5% annually.
    • Meet with and maintain relationships with all elected US Representatives and Senators from North Carolina annually regarding issues of importance to the ALS community.
    • Collaborate with other ALS organizations, the private sector and the public sector to advance initiatives of importance to the ALS community.
  5. What have and haven't they accomplished so far?
    We are in the last year of our 4-year strategic plan.
    • Programs and Development Committees are actively engaged with staff
    • On track to meet revenue objectives
    • Meet regularly with North Carolina Department of Health and Human Services key staff
    • Approved all eligible patient grant requests to date
    • Support all ALS clinics in NC
    • Added new telemedicine and ventilator specific ALS clinics
    • Completed Chapter Standards audit
    • Independent financial audit completed every year
    • Added 2 new social workers to team in 2014
    • Plan implemented to ensure proper orientation of new board members is occurring
    • Plan in place to provide staff professional development through annual training and education
    • Implementing strategies for increasing board membership and diversity
    • Added 5 new board members from 2014-2016
Service Areas

Self-reported

North Carolina

The entire state of North Carolina

Social Media

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

THE ALS ASSOCIATION JIM CATFISH HUNTER CHAPTER
Fiscal year: Feb 01-Jan 31
Yes, financials were audited by an independent accountant.

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Operations

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

Amyotrophic Lateral Sclerosis Association aka Amyotrophic Lateral Sclerosis Association, North Carolina Chapter

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2013
  • Board Chair and Board Members
  • Access to the GuideStar Community
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

President/CEO

Mr. Jerry M. Dawson II

BIO

Jerry Dawson has worked in the health and human services field since 1995 and became involved with The ALS Association in 1999 as a volunteer. The National Office recruited Mr. Dawson in early 2000 to be the Director of Care Services for the North Carolina Chapter. He accepted the position and was promoted two years later to the role of President and CEO. In 2007, Jerry was awarded the Rasmussen National Advocate of the Year award for his ALS public policy efforts. Under Jerry's leadership, the Chapter was awarded national Chapter of the Year two times. In 1999, Chapter annual revenue was approximately $5,000 and the Chapter served 50 people. In 2015, annual revenue grew to more than $2.5 million and the Chapter serves more than 500 families.

Governance

BOARD CHAIR

Mark Anthony

Merrill Lynch

Term: Jan 2016 - Jan 2017

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. Self-reported by organization

Yes

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?


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).

Gender
This organization reports that it does not collect this information for Volunteers.
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
No
We track retention of staff, board, and volunteers across demographic categories
No
We track income levels of staff, senior staff, and board across demographic categories
No
We track the age of staff, senior staff, and board
No
We track the diversity of vendors (e.g., consultants, professional service firms)
No
We have a diversity committee in place
No
We have a diversity manager in place
No
We have a diversity plan
Yes
We use other methods to support diversity
Diversity notes from the nonprofit
Diversity is vital to any board. Our nominating committee evaluates board composition and fills open seats with individuals who have the desired skill set, passion and availability to serve. 38% of our members come from western NC, 38% central and 24% from eastern NC. Twelve of our thirteen current members have a personal connection to ALS, half through a close friend and half through a direct family member. Two were full time caregivers.