The ALS Association North Carolina Chapter
Everything we do supports the discovery of effective treatments and a cure for ALS.
Programs and results
What we aim to solve
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
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.
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.
Connection Groups
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.
Multi-Disciplinary Clinics
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.
Where we work
Videos
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
• 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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
• 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 898 ALS patients in 2021
• Over $2.4M in financial assistance grants direct to ALS families over the past 10 years
• Successfully 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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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
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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
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Operations
The people, governance practices, and partners that make the organization tick.
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
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- 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 directorsas of 05/03/2022
Denise Kirkland
Wake Tech Community College
Term: 2020 - 2023
Denise B Kirkland
Wake Tech Community College
Jana M Antos
Cincinnati Insurance Companies
Kathryn Foster
Hospice and Palliative Care of Greensboro
Douglas Noreen
Howard, Stallings, From, Hutson, Atkins, Angell & Davis, P.A.
Christy Hall
N2 Publishing
Beth Christina
PRA HealthSciences
John P. Miller
Mendix
Linda Shuford-Reeves
American Airlines
Ann White
Darvis Simms
Rob Whited
NC State
Sarah Boyce
NC Dept. of Justice
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
No data
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
No data