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Apraxia Kids

Every Child Deserves a Voice

aka Apraxia Kids   |   Pittsburgh, PA   |  http://www.apraxia-kids.org

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Mission

Apraxia Kids is the leading nonprofit that strengthens the support systems in the lives of children with apraxia of speech by educating professionals and families; facilitating community engagement and outreach; and investing in the future through advocacy and research.

Ruling year info

2000

Executive Director

Angela Grimm

Main address

1501 Reedsdale Street Ste. 202

Pittsburgh, PA 15233 USA

Show more contact info

Formerly known as

CASANA

EIN

25-1858159

NTEE code info

Alliance/Advocacy Organizations (G01)

Pediatrics (G98)

Alliance/Advocacy Organizations (E01)

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

The ability to communicate is perhaps the most human of all skills and helps form our identities. Speech allows us to take our unique place in the world. Childhood apraxia of speech, one of the most severe childhood speech disorders, makes it difficult or impossible for children to plan the movements of speech structures (i.e. lips, tongue, soft palate, jaw) that make intelligible speech possible. While there is still much to understand about the causes, children who receive appropriate, early, and intensive therapy are usually able to become effective verbal communicators. Children who do not receive proper therapy are at risk to never develop understandable speech which can have long term effects on other aspects of childhood development.

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?

National Conference

Each year, APRAXIA KIDS holds a unique educational and support-building experience for professionals and parents through its 3-day National Conference. What makes this conference stand out is the almost even mix of Speech-Language Pathologists and parents/family members of children with apraxia who attend. As they sit side-by-side to attend the many diverse presentations that are offered, an appreciation of what each participant brings to the journey emerges. Participants have stated that this experience has been life-changing. Apraxia Kids does offer scholarships to families to attend the conference free of charge each year.

Population(s) Served

Apraxia Kids facilitates 8-10 new webinars each year for professionals and parents. The on-demand webinars provide parents and professionals with a variety of options that range from childhood apraxia of speech-specific topics to related critical issues such as bullying and academic challenges.

Our membership platform provides over 60 evidence-based webinars on childhood apraxia of speech and related issues for one year for a relatively low cost. Many of our online educational tools are free of charge.

Population(s) Served
Adults
Parents

Few opportunities exist in the Speech-Language Pathology field to have an intensive learning experience such as that offered by APRAXIA KIDS through its 4-day Intensive Training Institute, known to most as “Apraxia Boot Camp.” Participants come from across the country and into Canada for this experience of a lifetime to absorb as much as they can about evaluating and treating this complex motor speech disorder. Literally immersed in childhood apraxia of speech learning day and night, the graduates leave with an amazing level of advanced learning, potential lifelong friendships, and the ability to connect with their Boot Camp mentor as a support for their future work.

Population(s) Served
Adults

APRAXIA KIDS has recently developed and currently maintains a 900 member professional directory that parents can easily access through the apraxia-kids.org website. Parents now have the ability to readily find a speech-pathologist with at least foundational knowledge and experience in evaluating and treating childhood apraxia, as close to home as possible.

Population(s) Served
Parents
Caregivers

Each year, APRAXIA KIDS grants funding to researchers who submit proposals for treatment research pilot studies. These studies over the years have proven to be invaluable to the apraxia community in driving therapy decision-making. They also provide a foundation for further critical research that is desperately needed.

Population(s) Served
Academics
Children and youth

APRAXIA KIDS is fortunate to have the expertise and support of a 24 member Professional Advisory Council. The esteemed members of the council advise on such matters as program development, research grant awards, conference speakers, and advanced training participant selection.

Population(s) Served
Academics
Adults

APRAXIA KIDS supports half and full-day presentations on various topics related to childhood apraxia of speech to private agencies, school districts, and universities. Audiences range from the 20s to the 100s as therapists reach out constantly for more and more information on this challenging speech sound disorder. Local talks are also provided to Early Intervention agencies in the hopes that children with apraxia are identified sooner to get the intensive help they require.

Population(s) Served
Academics
Adults

Each year, Apraxia Kids awards speech tablets to children and families in need throughout the USA and Canada. The speech tablets can be used by children with apraxia for speech practice and/or as a speech generating device.

Population(s) Served
Children and youth

Apraxia Kids remains committed to supporting our families with free resources. Our online Parent Portal is filled with information, educational materials, and resources for families to utilize at varying stages of their apraxia journey.

Our IEP Road Map is an interactive tool designed to assist families through the entire IEP Process allowing them to be their childs best advocate.

Population(s) Served
Adults
Parents
Adults
Parents

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.

- To provide high quality information on childhood apraxia of speech and spread awareness to families, speech and medical professionals, policy-makers, and other members of the public.
- To provide practical support to families by providing up-to-date, evidence-based information on CAS and appropriate treatment options.
- To facilitate better public policy and services for children affected by the disorder.
- To provide training and educational opportunities for families and professionals.
- To increase the level of expertise available throughout North America to diagnose and treat childhood apraxia of speech
- To encourage/fund research in childhood apraxia of speech and sponsor scientific research meetings.

Apraxia Kids accomplishes its mission through eight programs:

1. National Conference - Each year, Apraxia Kids holds a unique educational and support-building experience for professionals and parents through its 3-day National Conference. What makes this conference stand out is the almost even mix of speech-language pathologists and parents/family members of children with apraxia who attend. As they sit side-by-side to attend the many diverse presentations that are offered, an appreciation of what each participant brings to the journey emerges.

2. Webinars - Our membership platform provides over 60 evidence-based webinars on childhood apraxia of speech and related issues for one year for a relatively low cost. We facilitate 8-10 new webinars a year for professionals and parents. The on-demand webinars provide parents and professionals with a variety of options that range from childhood apraxia of speech-specific topics to related critical issues such as bullying and academic challenges.

3. Advanced Trainings - Apraxia Kids offers a 4-day Intensive Training Institute for speech-language pathologists, known to most as “Apraxia Boot Camp." Speech therapists with a high-level of apraxia knowledge and deep commitment to improving their treatment approaches come from across the country and into Canada for this experience of a lifetime to absorb as much as they can about evaluating and treating this complex motor speech disorder.

4. Speech-Language Pathologist Online Directory - Parents can find a speech pathologist with at least foundational knowledge and experience in evaluating and treating childhood apraxia of speech as close to home as possible through our SLP Directory.

5. Speech Tablet Program - Each year, Apraxia Kids provides free speech tablets to children and families in need throughout the USA and Canada.

6. Research Grants - Each year, Apraxia Kids awards grant money to researchers who submit proposals for treatment research pilot studies. These studies over the years have proven to be invaluable to the apraxia community in driving therapy decision-making. They also provide a foundation for further critical research that is desperately needed.

7. Professional Advisory Council - Apraxia Kids is fortunate to have the expertise and support of a 24 member Professional Advisory Council. The esteemed members of the council advise on such matters as program development, research grant awards, conference speakers, and advanced training participant selection.

8. Presentations - Apraxia Kids supports half and full-day presentations on various topics related to childhood apraxia of speech. Talks are provided to private agencies, school districts, and universities to spread the word about current ideas in diagnosing and treating childhood apraxia of speech.

We have been able to achieve a great deal over the years due to the increasing commitment of parents, families, professionals and researchers. Our organization has planned well for long-term sustainability through close guidance of a committed board of directors and advisors.

-Apraxia Kids has hosted two Childhood Apraxia of Speech Research Symposiums, bringing together the world's most dedicated speech-language practitioners with knowledge on CAS.
- Apraxia Kids began an annual Apraxia Awareness Day (May 14) which grew into Apraxia Awareness Month in 2018. We help supporters from across the world to educate their schools and communities about CAS.
- Our Walk for Apraxia program has grown consistently since it began in 2007. In 2018, 70 communities participated in the Walk for Apraxia raising significant funding and awareness for the apraxia cause.
- Each year we educate over 2,000 people through our one-day workshops, online and on-demand webinars, and our annual National Conference on Childhood Apraxia of Speech.
- We provide direct support to children through the Speech Tablets for Apraxia program which has provided speech tablets and protective cases to children and through our small speech therapy grants program (administered by a partner) which has helped decrease the financial burden for families of low to moderate income.
- Apraxia Kids has been funding research grants to advance the science of childhood apraxia of speech. The program's success can be seen by a dozen new research journal articles published in the last several years from our grantees.
- Apraxia Kids serves as a trusted information clearinghouse for over 2 million worldwide visitors annually to our acclaimed Apraxia-KIDS.org website.

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 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

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

    We collect feedback from the people we serve at least annually, 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 demographics (e.g., race, age, gender, etc.), 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, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Apraxia Kids
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Operations

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

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lock

Connect with nonprofit leaders

Subscribe

Build 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.

Apraxia Kids

Board of directors
as of 01/26/2024
SOURCE: Self-reported by organization
Board co-chair

Claudio Capone

Trinity Health - New England

Term: 2023 - 2024


Board co-chair

Amber Pinskey

Grossman, Yanak & Ford

Term: 2023 - 2024

Sarah White

Stephanie Fera

Gary Fernando, MD

Lou LaVecchia

Jeffrey Mills

Alyson Taylor

Claudio Capone

Amber Pinskey

Edwin Maas, PhD

Matthew Stevens

Mary Sturm, MD

Jonathan Spiegel

George Lin

Brennan Woods

Amber Vecchio

Neil Kilby

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 1/26/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 01/26/2024

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.