Disease, Disorders, Medical Disciplines

Childhood Apraxia of Speech Association of North America

  • Pittsburgh, PA
  • http://www.apraxia-kids.org

Mission Statement

CASANA was founded in 2000 to address the need to have a national voice for children with apraxia of speech and their families. Our mission is to improve the systems of support in the lives of children with apraxia so that each child is afforded their best opportunity to develop speech. We do this through dissemination of information, support to families and professionals, educational programs, awareness activities and research support.

Main Programs

  1. Apraxia-KIDS Online Resources
  2. Apraxia Education
  3. Childhood Apraxia Research Program
  4. Childhood Apraxia of Speech Awareness
  5. iPads for Apraxia Project
  6. CASANA Therapy Grants
Service Areas

Self-reported

International

We are the leading organization providing apraxia information and raising awareness about the needs of children with apraxia and their families worldwide.  We provide support, referral and education throughout North America specifically.

ruling year

2000

Principal Officer since 2009

Self-reported

Sharon Gretz M.Ed.

Keywords

Self-reported

children, speech, language, impairment, communication, disorder, disability, apraxia, dyspraxia,

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Also Known As

C.A.S.A.N.A.

EIN

25-1858159

 Number

2681003275

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

CASANA continues to be the only national public charity exclusively dedicated to children with apraxia of speech.  In the past several years some of our major accomplishments in the area of providing direct support to children and families, advancing apraxia research through our grants program, investing in more professional expertise throughout North America, and raising awareness about the needs of children with apraxia and their families.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Apraxia-KIDS Online Resources

The Apraxia-KIDS website provides current high quality information on all topics related to children with apraxia of speech and received 2 million page views annually.  It includes an online library, apraxia events calendar, support groups and other resources. The online helpdesk responds to questions and provides referral information.  Support and information is provided to parents and professionals through moderated email group, messageboards, and social networking programs at Facebook and Twitter.  The Apraxia-KIDS Blog shared currently and timely information as well as personal accounts of living with childhood apraxia of speech.  The Apraxia-KIDS E-Newsletter is produced 6 times annually and includes up-to-date information to over 15,000 subscribers.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Adults

Budget

Program 2

Apraxia Education

Each year CASANA conducts 6 - 8 educational workshops for professionals and families to learn about assessment and treatment of childhood apraxia of speech.  Additionally, in the summer we provide the Annual Conference on Childhood Apraxia of Speech.  CASANA provides 14 webinars annually with outreach to many undeserved and rural locations. We created the Intensive Training Apraxia Institute in order to expand high level expertise in diagnosis and treatment, having trained 40 speech-language pathologists who will be recognized for advanced training and expertise and will serve as local and regional resources. Combined, these events reach close to 4,000 people each year.

Category

Population(s) Served

Adults

Budget

Program 3

Childhood Apraxia Research Program

Each year CASANA funds pilot research studies on identification, diagnosis, or effective treatment for children with apraxia of speech.  Researchers are able to then use the data to secure larger grants for ongoing work.  Additionally, CASANA established the Apraxia Research Registry. This is a "bottoms up" approach to apraxia research in that parents voluntarily enter a breadth of data regarding their child with apraxia.  Qualified researchers are able to ask CASANA for assistance in identification of possible subjects for studies and will be able to use aggregate data in order to detect and identify trends in all aspects of childhood apraxia of speech

Category

None

Population(s) Served

Children and Youth (infants - 19 years.)

None

None

Budget

Program 4

Childhood Apraxia of Speech Awareness

CASANA provides awareness materials and hosts the Walk for Children with Apraxia in order to raise awareness about this severe childhood speech disorder.  In 2012, over 10,000 walkers throughout the U.S. and several countries participated in the walk.  Educational materials and awareness products are distributed through our online store. Additionally, CASANA sponsors Apraxia Awareness Day (May 14) and successfully raised awareness throughout North America on the first awareness day in 2013.

Category

None

Population(s) Served

Children and Youth (infants - 19 years.)

None

None

Budget

Program 5

iPads for Apraxia Project

Started in 2011, the iPads for Apraxia project provides iPads, protective cases, and "apps" for speech practice and communication to qualified moderate to low income families. Mobile tablets and their applications can serve as "talkers" for children who are still developing intelligible speech.  Their portability makes them a good option for children with apraxia of speech. Further, children appear to be motivated to practice their speech more at home using interesting and appropriate apps.  In 2011, 40 iPads were awarded and a research project conducted on the possible benefits and uses of iPads and tablets for this population.  Based on those outcomes, CASANA decided to continue the program and in 2012 awarded 75 iPads and protective cases.  CASANA's aim in 2013 is to award 125 iPads and cases.   Individuals and organizations must apply be an annual deadline.

Category

Population(s) Served

Children and Youth (infants - 19 years.)

Budget

Program 6

CASANA Therapy Grants

CASANA has provided funds to the Small Steps in Speech Organization so that families of children with apraxia may apply for supplemental funding for speech therapy for children with apraxia.

Category

Children & Youth (0-19 years)

Population(s) Served

Children and Youth (infants - 19 years.)

None

None

Budget

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    - To provide high quality information on CAS and spread awareness to families, professionals, policy-makers and other members of the public.
    - To provide practical support to families by assisting with small therapy grants and communication tools for affected children.
    - 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.
  2. What are the organization's key strategies for making this happen?
    Not available.
  3. What are the organization's capabilities for doing this?
    We have been able to achieve a great deal in the last five 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.
  4. How will they know if they are making progress?
    Not available.
  5. What have and haven't they accomplished so far?
    - CASANA has created and guided an annual Apraxia Awareness Day (May 14) which has served to rally and galvanize the Apraxia community as well as achieve incredible outreach to communities, providing materials and tools to local and regional volunteers.
    - Our Walk for Apraxia program has grown 10 fold in the last 5 years. In 2014, 78 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 iPads for Apraxia project which has provided iPads and protective cases to 350 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. We have increased our financial commitment to these programs in 2015
    - CASANA 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.
    - CASANA serves as a trusted information clearinghouse for over 2 million worldwide visitors annually to our acclaimed Apraxia-KIDS.org website.
    - In 2014, we launched our Apraxia Speech Evaluation Center to provide extended evaluation opportunities for children when families are concerned about rate of progress, accurate diagnosis or speech therapy direction.
Service Areas

Self-reported

International

We are the leading organization providing apraxia information and raising awareness about the needs of children with apraxia and their families worldwide.  We provide support, referral and education throughout North America specifically.

Social Media

Funding Needs

We are very interested in a number of projects and need funding for them: To expand and intensify training for SLPs regarding appropriate diagnosis and treatment, creating new "experts" throughout the US and Canada so that families to not have to travel far from home to get appropriate diagnosis and treatment recommendations To increase our Apraxia Research fund in order to expand the number of grants we are able to issue and thus increase knowledge about treatment effectiveness To create a research subject registry to enable additional research into the causes and treatment of childhood apraxia of speech To create additional multimedia educational resources for families and professionals  Ongoing funding in order to continue to provide and improve existing services

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

CHILDHOOD APRAXIA OF SPEECH ASSOC. OF NA
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

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

Childhood Apraxia of Speech Association of North America

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2013
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Principal Officer

Sharon Gretz M.Ed.

BIO

25 years experience at nonprofit program development

STATEMENT FROM THE Principal Officer

"CASANA has grown amazingly the last five years, enabling it to expand programming in all areas to benefit children with apraxia of speech and their families.  With a very astute board of directors that have assured CASANA is a fiscally-sound organization now and in the future, we continue to be the only national nonprofit organization dedicated exclusively to the needs and best interests of children with apraxia and their families.  I am very proud of our board, staff, and volunteers that have committed to our passion of seeing to it that children with apraxia of speech reach their full potential in communication and in life."

Governance

BOARD CHAIR

Dr. Mary Sturm M.D.

Veteran's Administration Hospital

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization


RESPONSE NOT PROVIDED

BOARD ORIENTATION & 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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?