ALS Association Texas Chapter

Create a world without ALS

aka The ALS Association Texas Chapter   |   Plano, TX   |  www.alstexas.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.

Notes from the nonprofit

There are several organizations that support ALS patients, but we're different. Many organizations focus solely on one area of ALS support, but we focus on the entire ecosystem: Local Care, to support patients who need help now, Advocacy, to ensure public policy serves the needs of ALS patients, and Research, so that one day nobody will suffer from ALS again. All three of these areas serve an important, equal purpose for improving the lives of current and future people with ALS.

Ruling year info

N/A

Executive Director

Mr. Tanner Hockensmith

Main address

5830 Granite Parkway 100-320

Plano, TX 75024 USA

Show more contact info

EIN

74-2678974

NTEE code info

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.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Rather than focusing solely on one area of ALS support, we focus on the entire ecosystem: local care, to support patients who need help now, advocacy, to ensure public policy serves the needs of ALS patients, and research, so that one day nobody will suffer from ALS again. All three of these areas serve an important, equal purpose for improving the lives of current and future people with ALS.

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?

General Overview of Programs

The Association's operating programs focus on educating people with ALS (PALS) and their families about living with ALS.

This is accomplished through a comprehensive network of programs including; connection group meetings which offer support to PALS and their families. It provides an opportunity to talk and share information with people in similar situations. We also offer workshops including our Annual Caregivers Conference, "Ask the Doctor", and a 3-part series for Newly Diagnosed Patients. There are also seminars for respite care providers, and "The ALS Informer" (our quarterly news magazine) which provides practical information for PALS, their families and caregivers.

Additionally, our patient care services department links people with critically needed community services and helps them through the health care insurance system. For those in need, the Equipment Loan Closet provides needed durable medical equipment to PALS free of charge. The Association may also provide financial support for respite care services.

Population(s) Served

Our Texas Chapter facilitates monthly meetings in various cities throughout the state. Our meetings are designed to benefit persons diagnosed with ALS, their family members, and/or caregivers. It also offers an opportunity for helpful information to be shared that benefits the ALS community. We also offer Caregiver specific meetings for anyone involved in the care of a person with ALS.

Population(s) Served

Our Chapter is able to loan durable medical equipment and augmentative communication devices to persons diagnosed with ALS, based upon a recommendation from qualified professionals (such as wheelchair seating experts and speech pathologists).

Population(s) Served

Our patient care clinics house the doctors and medical professionals, including physicians, speech pathologists, and counselors, that an ALS patient needs to see. These physicians work together to ensure each patient gets top-quality care. This multidisciplinary approach is scientifically proven to extend patients' lives.

Population(s) Served

Case managers support people with ALS in Texas through phone, email, social media and face to face consultations. These consultations provide invaluable disease management support and advice on improving quality of life.

Population(s) Served

Where we work

Awards

Meme of the Year 2014

SXSW Film Festival

Videos

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.

Ultimately, to create a world without ALS! Until that happens, we continue to lead the fight to treat and cure ALS through research and 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.

There are several organizations that support ALS patients, but The ALS Association is different. Many organizations focus solely on one area of ALS support, but we focus on the entire ecosystem:

1. LOCAL CARE, to support patients who need help now
2. ADVOCACY, to ensure public policy serves the needs of ALS patients
3. RESEARCH, so that one day nobody will suffer from ALS again.

All three of these areas serve an important, equal purpose in improving lives of current and future people with ALS.

Rather than focusing solely on one area of ALS support, we focus on the entire ecosystem: local care, to support patients who need help now, advocacy, to ensure public policy serves the needs of ALS patients, and research, so that one day nobody will suffer from ALS again. All three of these areas serve an important, equal purpose for improving the lives of current and future people with ALS.

We employ a team of subject matter expert in the areas of case management and strategic program development. We also partner with organizations that serve people with ALS (hospital systems, DME companies, medical professionals) to enhance resources.

We have increased our programming funding by 60% since calendar year 2015. That increase has enabled us to increase digital awareness, connecting us with over 1100 patients in 2017. We have also been able to partner with 4 new multidisciplinary clinics in the state providing essential care to Texans with ALS.

We hope to increase patients access to clinical care, increase our relevancy to patients at all stages of ALS, build a state advocacy program, increase awareness in our federal advocacy program, and create a patient support model that focuses specific needs.

Financials

ALS Association Texas 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
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  • Compare nonprofit financials to similar organizations

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ALS Association Texas Chapter

Board of directors
as of 9/17/2019
SOURCE: Self-reported by organization
Board co-chair

Mr. Trent Parten


Board co-chair

Ms. Rebecca Moss

Randy O'Hare

Bob Ballou

Jeff Duncum

David Gaume

Mary Klenke

Richard Lautzenheiser

Rebecca Moss

Trent Parten

John Spiekerman

Chris Clark

John Fleming

Khaliah Guillory

Sterling Hillman

Kristofer Knapstein

Alison Talarcek

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