National Aphasia Association, Inc.

Rating: 4.86 stars   14 reviews

Issues: Health, Cancer

Location: 350 Seventh Ave Suite 902 New York NY 10001 USA

Mission: The NAA''s mission is to educate the public to know that the word aphasia describes an impairment of the ability to communicate, not an impairment of intellect. The NAA makes people with aphasia, their families, support systems, and health care professionals aware of resources to recover lost skills to the extent possible, to compensate for skills that will not be recovered and to minimize the psychosocial impact of the language impairment. The NAA respects and values cultural and linguistic differences and makes every effort possible to acknowledge the impact of culture and language on the performance of each individual with aphasia. The NAA provides supportive and advocacy services to all persons with aphasia regardless of individuals'' race-ethnicity, religious affiliation, cultural and cognitive linguistic background or sexual orientation.
Programs: The NAA's programs include: * providing information about aphasia to affected individuals, their families, and the larger community. We also provides referrals to local resources and connect aphasic individuals with each other. Basic information packets are provided free of charge. The information packets include general information about aphasia, tips for communicating with people with aphasia, and other material. Our NAA web site (www.aphasia.org) offers a way to connect people with aphasia and their families with each other. It also updates visitors on NAA activities. It includes a list of publications available from the NAA, the text of many publications, and previous and current newsletters. The site is intended to be as easy to use as possible by people with aphasia. Our toll-free telephone number is (800) 922-4622. Many individuals do not have access to computers or have questions that require more personal attention. Each one of the almost 4,000 calls to the toll-free number last year was answered personally by staff. The most frequently asked questions include: Where can I find a stroke support group that will welcome people with speech problems? Are there any clinics in my area that offer speech therapy? Where can I get help now that my insurance has run out? People may also order NAA literature by calling the toll-free number. The NAA offers publications that are easy to read and include fact sheets, information about national and community resources, and tips for communicating with someone who has aphasia. Other information includes a list of videotapes, a summary of sources of information about the use of computers and adaptive technologies, and information regarding the legal aspects of aphasia. The NAA is committed to providing written materials on additional topics as needs are identified. The NAA's State Representatives Network is a national network of health care professionals throughout the country that provides information about local resources including the availability of support groups, rehabilitation services, and social services. There are currently 146 state representatives in the network. The NAA maintains a state-by-state directory of local aphasia groups that supply support and information for individuals with aphasia and their families. There are currently over 400 aphasia community groups listed, and the Resource Center refers individuals to these groups whenever possible. To encourage the growth of a network for younger individuals (ages 13-30) years old, the NAA publishes a directory of names of young people who have acquired aphasia and a list of organizational resources for them. For many people, these groups represent their first entree back into the larger community.* The establishment of "Speaking Out," a biennial national conference for people with aphasia and their families as well as professionals who work with them. * The designation of the month of June each year as National Aphasia Awareness Month to bring public attention to aphasia through materials supplied through the NAA. * The distribution of the American edition of "The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and their Families." This edition was edited by Martha Taylor Sarno, MA, MD (hon), an internationally recognized authority in the field of communication disorders and Joan Peters, previous Executive Director, NAA. The book was called "an essential resource for people with aphasia and their families" by Dr. Oliver Sacks, neurologist and author.* The Association's email bulletin, which is sent out monthly.

2011 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

The National Aphasia Association is a wonderful organization that supports the friends and families of people with aphasia, as well as the survivor. When someone loses his speech, it affects everyone in his life. The NAA's list of support groups is very valuable, and the small-but-mighty staff is always patient and knowledgable. With the country's aging population, and thousands of troops returning home with brain injuries, I only see this resource becoming more relevant and more essential for us all!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

When my husband survived a serious stroke sixteen years ago, he was left without language or comprehension, and he was only 46. I came across National Aphasia through a reference in a stroke info book and called. (I had already called American Heart and National Stroke, and their help was more general to stroke.) I was so comforted by the woman on the phone, who's husband had suffered the same loss, and the materials they sent. As a result of their good work, I became active in the Aphasia Community, and started the only support group in Indianapolis, IN for aphasia. Because of them, I was led to more specific therapies for my husband's recovery, and though very different, he has a high quality of life. They regularly have small conventions around the country to help people with aphasia adjust and learn more about their disorder. Being able to communicate is like breathing. They are the only association I am aware of devoted solely to Aphasia.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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1 previous review
Rating: 5 stars  

When my 46 year old husband suffered a stroke, National Aphasia was the one agency that provided pertinent information and consolation.
I found this resource in the back of a book about stroke. The personal, caring way they reach out with every phone call speaks volumes about this wonderful organization. Aphasia affects more people than Parkinson's Disease, but few people have every heard of it. National Aphasia works to bring knowledge, acceptance and support to our communities. The work they do is so important, and so unrecognized. I have been in the Aphasia Community since 1996, and since started a support group. Without them, we could not enjoy the success we have.
As a volunteer in the Aphasia community, and as a registered nurse, I sincerely support the work this organizations does.

I've personally experienced the results of this organization in...

They were the first organization to help me deal with my husband's aphasia after his stroke. I have attended many of the Speaking Out conventions they have sponsored.

If I had to make changes to this organization, I would...

Make more people aware of it and the good work they do.

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Role: Professional with expertise in this field
Rating: 5 stars  

As a Speech-Language Pathologist, I have seen first hand how the NAA has helped many of my clients and their families. What a great resource for those who knew nothing about aphasia until it totally changed their lives.

I've personally experienced the results of this organization in...

their empasis in educating people on aphasia.

If I had to make changes to this organization, I would...

give them unlimited funds!

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Rating: 5 stars  

I love the NAA website!! It's user-friendly. It provides valuable information to professionals, persons with aphasia and their loved ones as well the public. It's been a great resource to me and I appreciate the many volunteers who spend countless dedicated hours to keep the site updated and informative. Thanks NAA!! You do so much for so many!!

I've personally experienced the results of this organization in...

I receive the newsletter. It provides great information for me to pass on to persons with aphasia and their families. It's my favorite website to refer patients and their families.

If I had to make changes to this organization, I would...

Absolutely nothing!!

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Role: Professional with expertise in this field
Rating: 5 stars  

The NAA supports organizations all over the country in their advocacy and service to individuals with aphasia and their families. They are fully committed to the cause and connect all service providers with objectivity and inclusion. The NAA has provided our small nonprofit organization in NC with materials, educational resources and the like.

I've personally experienced the results of this organization in...

regards to their responsiveness to everyone they are in contact with.

If I had to make changes to this organization, I would...

Allow them to add staff and/or volunteers to help the director.

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Rating: 5 stars  

The National Aphasia Association was created in direct response to a great need to speak for a group of individuals who, literally, cannot speak at all for themselves or cannot effectively get their message out or access others in regard to a critical need for support. Persons with aphasia have experienced throughout their "pre-Aphasia" life the ability to communicate normally - to sit around the family table and tell stories, to read to their children, to give speeches or lectures, to order at a drive-through, to verbally express their affection for someone, to read a book or write a letter. Then, usually with a swift "brain attack" those taken-for-granted abilities are taken away or decreased significantly. The NAA was organized to provide advocacy with governmental agencies, healthcare providers, and other influential entities. We wanted to educate the public in general about aphasia and to let persons with aphasia and their families and friends have easy access to educational materials, provider lists, recommendations for improving communication, and ways they could also help each other. Though a small organization, it has touched the lives of thousands of people with aphasia, their families and healthcare professionals. With a meager budget and a lot of determination, a small group of dedicated advocates started an organization which has been amazingly effective in getting "the words" out about the dilemma and the needs of those lacking words to express it themselves. Funds have been raised, educational materials have been developed, easily accessed volunteer professionals have been made available for contact, and community groups have been organized for enhancing communication skills and supporting families. There is much work to be done but the story of NAA is a true wonder and deserves to be told.

I've personally experienced the results of this organization in...

the community aphasia group I helped organize initially and, more recently, in the conversation group started as an outgrowth of that at a local hearing and speech center.

If I had to make changes to this organization, I would...

N/A

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Rating: 5 stars  

I don't know where I would be without the NAA. My father has global aphasia from a stroke 6 years ago and has been living with this condition ever since. THere are not many resources out there for individuals with aphasia and their caregivers, and even fewer support networks. This is what makes the NAA so vital to all of us.

I've personally experienced the results of this organization in...

The lives of individuals I speak with

If I had to make changes to this organization, I would...

Make regional representatives more accesible (perhaps through paid part time positions)

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Role: Professional with expertise in this field
Rating: 5 stars  

When a loved one loses language due to a stroke or head injury, it is quite frightening for family members to watch. Sometimes professionals have given the same information to patients so often that families are not given the time needed to process infromation before having to make decisions. So, families remain confused aboput what is happening to the family member with aphasia. The National Aphasia Association provides professionals and family members to assist families and patients who are trying to understand aphasia. There are representatives in every state in the United States, so finding people who can understand and relate to an individual's situation and resources is very possible. With the up-to-date resources contained at the NAA website as well as via NAA meetings across the country, volunteers can be sure to give families and patients current information in a compassionate, knowledgeable manner.

I've personally experienced the results of this organization in...

helping families and other professionals who have called me.

If I had to make changes to this organization, I would...

schedule regional and online meetings made available to volunteers in order to make the ability to access current information easier in this time when national travel is expensive for some volunteers.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

It quickly provides knowledge about aphasia to people in a crisis setting at little or no cost.

When was your last experience with this nonprofit?

2011

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Role: Professional with expertise in this field
Rating: 5 stars  

The National Aphasia Association [NAA] has for many years steadfastly led the advocacy efforts for people with aphasia [People With Aphasia] and their caregivers. In addition, the NAA has provided information; workshops and materials to educate both PWA, their caregivers and the public that has been invaluable in advancing independence, recovery and reintegration. The NAA programs for educating public employees in more effective communication with PWA and for serving multicultural clients changed lives.

I've personally experienced the results of this organization in...

my service as a state representative and on the multicultural task force. I have received numerous comments from PWA and their caregivers after their experiences with the NAA. I have also participated in the NAA regional outreach workshops [ SpeakOut] witnessing first hand the impact on PWA, caregivers and professionals.

If I had to make changes to this organization, I would...

grow the scope of how it services PWA.

How does this organization compare with others in the same sector?

Very Well

How much of an impact do you think this organization has?

Life-changing

Will you recommend this organization to others?

Definitely

What is unique about this organization?

It is THE national voice for PWA.

When was your last experience with this nonprofit?

2011

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Role: Professional with expertise in this field
Rating: 4 stars  

This is the premier organization at the national level to help educate and support both the public and persons with aphasia. This organization has an amazing amount of information available to help those with aphasia. I had a client with aphasia who had gotten into legal trouble because the authorities would not read her Aphasia Card and didn't understand her condition. The NAA provided me with several articles and rulings about persons with aphasia and legal issues that I gave to my client. The NAA campaigns relentlessly to get the public to know more about aphasia. One of the best services they provide are hand-outs: stickers, aphasia cards, brochures, books, and other materials that educate about aphasia and provide a means for persons with aphasia to communicate in a pinch.

I've personally experienced the results of this organization in...

Attending Speaking Out conferences, speaking with the organizers at various conferences, requests for information, providing information about my organization

If I had to make changes to this organization, I would...

Give them more resources and money to help them update their services as needed. They are trying to do a huge job with a limited staff and resources.

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