The ALS Association Florida Chapter

Until there is a cure, there is care.

Tampa, FL   |  http://www.alsafl.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 ALS Association Florida Chapter serves people living with ALS and their families, we serve all geographic areas in Florida.

Ruling year info

1990

President and CEO

Ray Carson

Main address

3242 Parkside Center Circle

Tampa, FL 33619 USA

Show more contact info

EIN

94-3124732

NTEE code info

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

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

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.

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?

Care Services

The Chapter provides a wide range of integrated programs to serve the ALS community in Florida.

Through our care services program we help people living with ALS and their families navigate this scary disease. Services include, but are not limited to 1] sponsorship of five (5) ALS Multidisciplinary Clinics in the state of Florida, which include both financial support and in-kind staffing support. The clinics coordinate care and interface with the primary care physician, local neurologist, and community-based services; 2] a network of eight (8) care services staff who help people living with ALS, caregivers and families navigate the physical, social, emotional, and financial effects of ALS through care management, facilitate seventeen (17) support groups, social work services, referrals, assessments, education and government/veteran benefits/insurance advocacy; 3] loaned medical equipment and assistive technology programs that provide needed medical, communication, and assistive technology to maintain and support activities of daily living.

Population(s) Served
People with diseases and illnesses

The Chapter raises awareness about ALS, the people we serve, our public policy goals, and the search for treatments and a cure through commanding public policy and advocacy. The approaches include: 1] our interactive website, a definitive source of information for those battling ALS and people looking for the latest information about the disease; 2] social media outreach, which include Facebook and Twitter; 3] statewide awareness events, such as the Hope and Help Symposiums and webinar series; 4] statewide marketing campaigns, which included Walk in their Shoes, Lou Gehrig Love Letters, ALS on the Run, and Frozen in Time.

Population(s) Served
People with diseases and illnesses

The Chapter, through The ALS Association, contributes to research led by a global network of scientists who advance new discoveries, treatments for ALS, and ultimately find a cure. This is why awareness and advocacy matter, so that there is continued financial support for the research for treatments and a cure. The ALS Association has committed $99 million in research grants worldwide to find effective treatments and a cure for ALS. There are three (3) major ALS research centers in Florida: The Mayo Clinic in Florida (Jacksonville), the University of Miami (Miami), and the University of South Florida (Tampa). Florida patients and researchers have participated in all of the major trials that have recently come through the ALS pipeline. More than ever before, we are confident that we are close to finding a cure for ALS.

Population(s) Served
People with diseases and illnesses

Where we work

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.

The ALS Association Florida Chapter's goals are led by our mission priorities, which include: 1] raise the level of awareness of The ALS Association Florida Chapter as the leading voice and most trusted source of information about Lou Gehrig's Disease; 2] support The ALS Association global research program to understand the disease, develop treatments, and ultimately find a cure; 3] provide every person with ALS and their families access to high quality, consistent and compassionate support services; 4] advance a public policy program that increases funding for ALS research, improves patient services and empowers the entire ALS community; 5] lead the effort to align the Chapter and the ALS community in Florida around the needs of those living with ALS; 6] operate within a business model designed to ensure financial stability and promote financial strength.

2016-18 Strategic Plan guides the Chapter's goals and objectives:

1] Raise the level of awareness of The ALS Association Florida Chapter as the leading voice and most trusted source of information about Lou Gehrig's Disease.
a. position the Chapter as the preeminent ALS organization in the State of Florida.
b. increase public recognition and support of ALS and The ALS Association Florida Chapter.

2] Support The ALS Association global research program to understand the disease, develop treatments, and ultimately find a cure.
a. invest in research that will lead to providing meaningful therapies to improve the lives of those living with ALS.
b. collaborate with and promote The ALS Association's research initiatives in the state of Florida.

3] Provide every person with ALS and their families access to high quality, consistent and compassionate support services.
a. provide, sustain, and expand premier services to the ALS community.
b. expand The ALS Association Florida Chapter's presence throughout Florida to meet the comprehensive needs of the ALS community.

4] Advance a public policy program that increases funding for ALS research, improves patient services and empowers the entire ALS community.
a. create a culture of advocacy that generates public and private funding and advances public policies at both the national and state levels.
5] Lead the effort to align the Chapter and the ALS community in Florida around the needs of those living with ALS.
a. operate as a unified organization across Florida.
b. develop partnerships and collaborations throughout the state that enhance and leverage resources to meet the needs of the ALS community.
c. develop systems and methods to collect data from all stakeholders on an ongoing basis to understand and develop the scope and reach of The ALS Association Florida Chapter.

6] Operate within a business model designed to ensure financial stability and promote financial strength.
a. create an integrated, diversified fund development program to meet the ever-growing needs of the ALS association.
b. increase the involvement of volunteer leadership in the fund development process.
c. focus on board development activities to further strengthen the governance of the Chapter.
d. work within a business model that demonstrates prudent financial stewardship.
e. create a culture that attracts and retains employees, volunteers and stakeholders.

The Chapter is well qualified to carry out its mission and programs thanks to the leadership of a dedicated Board of Directors, CEO/President, and the continued support of key community partners, volunteers, supporters, and other constituents.

Board of Directors: The Board is comprised of 15 members who set policy, ensure that the mission and goals of the organization are met, ensure adequate financial resources and provide financial oversight. The work of the board is accomplished through its committees, including governance, fund development, advocacy, and finance.

Kimberley A. Hanna, President and CEO: Ms. Hanna brings 20 years of experience in non-profit administration, fundraising, and financial services to The ALS Association Florida Chapter. A former banker, Ms. Hanna has worked as Executive Director and Chief Development Officer for several local and statewide non-profits in Florida. Hanna holds a MFA from Goddard College in Plainfield, VT; a Master's degree from the University of South Florida in Tampa, FL; and a Bachelor's degree from Eckerd College in St. Petersburg, FL.

Ms. Hanna is an active community participant and has served on the boards of numerous organizations over the years, including The University of Tampa; WEDU, a PBS affiliate- Community Advisory Board Member; The Tampa Theater; Florida Orchestra Guild; and The League of Women Voters.

Key community collaborations: The Chapter collaborates with ALS Clinics and ALS Association Certified Centers of Excellence that include, Mayo Clinic in Florida ALS Center of Excellence in Jacksonville, University of Miami Kessenich Family ALS Center of Excellence in Miami, University of South Florida ALS Center of Excellence in Tampa, UF Health Jacksonville Multidisciplinary ALS Center in Jacksonville, and Lee Health ALS Recognized Treatment Center in Ft. Myers.

The strategic plan's goals and objectives follow a two-year plan (2016-2018). The Chapter is on track to achieve all the goals for the Chapter by 2018.

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 shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

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

  • 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,

  • What significant change resulted from feedback?

    A client survey was performed to identify the need and viability of a volunteer program to offer assistance with domestic tasks in the home. From the results of the survey, the program was developed and has been deployed.

  • With whom is the organization sharing feedback?

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

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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

The ALS Association Florida 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 Florida Chapter

Board of directors
as of 9/29/2021
SOURCE: Self-reported by organization
Board co-chair

Mr. John Cannistra

Boar’s Head Brand Company


Board co-chair

Mr. Hampton Graham

Scott McRae Automotive Group, LLLP

Tim Cummings

Community Volunteer

Wendy Bitner Rodin

Bitner & Associates

Kevin Conn

Healthsouth

Alecia Bailey

Community Volunteer

Sharon Maybrook

Community Volunteer

Joann Clynch

Florida Power and Light

Glenn Stambaugh

SunTrust Bank

Melissa Spring

Troy Fields

John Collins

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 09/29/2021

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)

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 09/29/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.