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Amyotrophic Lateral Sclerosis Association aka Amyotrophic Lateral Sclerosis Association, Jim "Catfish" Hunter Chapter Organization Name provided in the GuideStar Exchange* as of 07/26/2013: Amyotrophic Lateral Sclerosis Association aka Amyotrophic Lateral Sclerosis Association, Jim "Catfish" Hunter Chapter

Organization Name as listed in the IRS Business Master File as of 06/09/2014: AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION

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AKA  ALS Association Jim "Catfish" Hunter Chapter
Raleigh, NC
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

Amyotrophic Lateral Sclerosis Association aka Amyotrophic Lateral Sclerosis Association, Jim "Catfish" Hunter Chapter Organization Name provided in the GuideStar Exchange* as of 07/26/2013: Amyotrophic Lateral Sclerosis Association aka Amyotrophic Lateral Sclerosis Association, Jim "Catfish" Hunter Chapter

Organization Name as listed in the IRS Business Master File as of 06/09/2014: AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: ALS Association Jim "Catfish" Hunter Chapter
Physical Address: Raleigh, NC 27601 
EIN: 56-1609591
Web URL: www.CatfishChapter.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G99 Diseases, Disorders, Medical Disciplines N.E.C.
G Disease, Disorders, Medical Disciplines
G50 Nerve, Muscle and Bone Diseases
Ruling Year: 1990 


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Mission Statement

OUR VISION Create a world without ALS. OUR MISSION 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.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses (GuideStar Exchange,
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July 2013)

Fiscal Year Starting: February 1, 2011
Fiscal Year Ending: January 31, 2012

Total Revenue $1,848,562
Total Expenses $1,676,013

Revenue & Expenses (GuideStar Exchange,
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July 2013)

Fiscal Year Starting: February 1, 2011
Fiscal Year Ending: January 31, 2012

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

Financial Statements

Audited Financial Statement is not available for this organization.

Annual Reports

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Leadership (GuideStar Exchange,
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July 2013)

Mr. Jerry M. Dawson, II

Board Chair (GuideStar Exchange,
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July 2013)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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July 2013)

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Board Leadership Practices (GuideStar Exchange,
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July 2013)
?

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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in July 2013

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Programs

Program: Adaptation & Equipment Program (GuideStar Exchange,
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July 2013)

Budget:
$11,000
Category:
People/Families with of People with Physical Disabilities
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

The Adaptation and Equipment Program operated by the Catfish 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.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Catfish Chapter Quarterly Grant (GuideStar Exchange,
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July 2013)

Budget:
$241,100
Category:
People/Families with of People with Physical Disabilities
Population Served:
None
None
None

Program Description:

The "Catfish" 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 modications, auto modifications, computer access, communication devices, environmental controls and generators for invasive or non-invasive breathing assistance. Recipients may apply for and receive four grants per year for $625 each. Grants will be awarded quarterly on a first come first served basis and based on available funds. First time applicants will be given priority.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Support Groups (GuideStar Exchange,
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July 2013)

Budget:
$39,500
Category:
People/Families of People with Health Conditions
Population Served:
None
None
None

Program Description:

Support groups exist entirely for you, the person with ALS, and your family or loved ones. Here is a list of some things ALS support groups provide: A forum to share information and practical experience, whether it’s learning how to improve physical function, discussing new drug trials, or experiencing the latest augmentative technologies all geared to helping you live more fully with the disease. A safe place to allow your emotions to speak for you. The group offers an unparalleled opportunity to learn how other people cope with various problems similar to yours, to see that patients and family members are not completely unique, and that others experience the same type of feelings and emotions about the disease as you do. An educational gathering spot where speakers and caregivers address subjects of major interest and exchange; how to incorporate physical and occupational therapy into your life; how to counteract problems in swallowing and chewing; safeguards that can help you avoid pulmonary complications; and ways of coping with depression and caregiver “burnout”, among many other topics. A place to witness firsthand the constant miracle of people continuing to live productive, fulfilling lives in spite of having ALS. Support groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness. Put these meetings at the top of your calendar; they belong to you. Your presence there will open doors you never knew existed.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit Additional Information
A Charting Impact Report consists of an organization’s responses to the five questions. Helping validate this self-reported data are three reviews. Once an organization has used the online interface to complete its report, its responses will produce a document with a unique URL that will be shared on this website, on your GuideStar profile, on the reports of charities participating in BBB Wise Giving Alliance evaluations, and – in the future – with other websites and information sources about nonprofits. We encourage organizations to use this URL to share their report on their own website and through their own media channels. Participants will receive guidance about promoting their Charting Impact Report, along with other benefits, once they publish their report.

In 2000, we served approx. 50 people living with ALS in NC and offered 4 support groups. Today, we serve more than 450 with an additional 231 people traveling to NC for care. We offer 15 support groups and fund all four ALS clinics in NC. The demand for our services continues to increase steadily. Last year, we funded 409 individual grants to help families with home modifications, transportation, communication devices, and many other important needs. Since our program began in 2004, the Chapter has funded more than 2,300 grants.
For more in-depth information about this organization's impact, view their Charting Impact Report.
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