Collaborations:  The Key is Connection!

A Note from Maura

When people ask me what I’ve learned most from almost two decades in a nonprofit aphasia organization, the answer is quick and comprehensive!  Whether it was in the position of Executive Director or in my new role as Director of Clinical Services, … the answer is Collaboration! TAP Unlimited has been so fortunate to develop, connect and cultivate relationships with area nonprofits, community businesses, rehabilitation professionals, universities and other aphasia centers across the globe! Being involved in Aphasia Access has allowed us to participate in projects that impact the lives of individuals with aphasia and their families, now and in the next generation of service provision. 

We couldn’t let the 12 Days of TAP wind down without recognizing this collaborative aspect of our organization.  We are not operating on an island and our connections with like minded providers has resulted in everything from community giving (i.e., TAPRoots) to game nights to research projects. Many of the projects are “behind the scenes” and are responsible for the positive image of TAP Unlimited amongst our colleagues and professional associations.

Today, the 12 Days of TAP story is about how one such collaboration was born out of a shared interest, fostered by the group leaders and is resulting in an effort by several TAP clients to assume leadership roles to inspire other aphasia programs across the United States.  Enjoy hearing about the TAP and SCALE Bible Study partnership.

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A New Partnership

In May 2021, members of the TAP Unlimited Bible Study group expressed interest in meeting other people in the aphasia community who participate in Bible Study. Group leader, Julia Bryan Canavan, contacted the SCALE Program in Baltimore and invited SCALE’s Bible Study group members to virtually join TAP’s Bible Study group for fellowship and to use the Bible as a tool for improvement of speech, listening and reading. Members from both centers enjoyed sharing their faith testimonies and their favorite bible verses.

New friendships quickly developed, and members agreed to periodically meet throughout the year. Two group members from each center volunteered to co-facilitate the gatherings. These volunteers established a “focus group”, (facilitated by clinician group leaders from TAP and SCALE), to meet weekly to practice skills needed to co-facilitate aphasia groups. 

In 2022, they will begin co-leading small Bible Study groups at both centers and hope to offer their support to other aphasia programs interested in offering Bible Study groups. We have seen their personal relationships grow along with their language skills as they share and encourage one another. The TAP/SCALE partnership has provided members with access to the Word of God and to others with similar interests. Further, the collaboration has provided opportunities for members to encourage one another through their testimonies, practice their communication skills, develop leadership skills and the opportunity to co-design a model for empowering Person’s with Aphasia to re-engage in the wider-aphasia community as group facilitators.

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

Aphasia is defined as a language impairment caused by stroke or other brain injury. It is known to result in deficits in all four language modalities: reading, writing, listening/understanding and speech. But after 30 years of impassioned work with individuals with aphasia and their families (not to mention a personal family aphasia experience), I’d argue that there is one aspect of aphasia that is impacted more significantly, and is most detrimental to the goal of full life participation, than any of these linguistic components. What is it?  … CONFIDENCE! 

We spend a lot of energy in our field promoting the fact that aphasia, in and of itself, does not affect intelligence. An individual is as smart as they were before their neurological insult. They hold their memories, thoughts and ideas but struggle for the means to express them. Imagine the frustration… imagine the conversation one has in their own head as they attempt to understand the letters, words and numbers that they have known their entire life. The feeling of self assurance and certainty waiver and the resulting confidence shaken. 

As we learn more about neuroplasticity and rehabilitative potential, we must also look to the need to address the hit to one’s communicative confidence. How can we support and lift a person’s appreciation of their abilities? How can we demonstrate their skills in accessing and utilizing multimodal communication and effectively engaging in meaningful conversation? A part of the answer is certainly to offer opportunities, to provide platforms and connect a community who “gets it”. We can do this…we can do this together. Let’s hear how Eric and his family experienced aphasia, the challenge of impaired communicative confidence and how they are tackling it with HOPE at the center! 

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Eric Barto (as shared by his wife Debbie)

Eric is a Glioblastoma Multiform Stage 4 Brain Cancer Survivor since 2004. He was miraculously doing well from the Brain Cancer, Is a PGA Member and resumed working part time picking up balls at a golf course and giving golf lessons following the brain cancer. In July of 2020, Eric had some skin cancer removed and as a result got an infection in his skull. Two medications given counteracted his seizure medicines and put his brain in seizure mode. He was hospitalized for two and a half months and had his brain reset four times to stop the seizures. Following our hospital stay, Eric received home health speech therapy along with outpatient speech therapy for 8 months. We noticed small improvements, but nothing significant unfortunately.

Eric was becoming more and more withdrawn because he lacked confidence to communicate with others. His doctors even said that Eric felt lost unless I was there to supplement the conversation. This was not typical of his personality at all. He is an extrovert, has written a book entitled H.O. P. E. and shared his book at musical venues, Relay for Life and at many churches. He is a gifted speaker!!

We joined the TAP community a month ago and are truly amazed with the improvements we have noticed!!

We have seen significant changes in Eric’s confidence level! Eric was starting to not answer phone calls nor return texts unless he was prompted and I was there to help him. He is now starting to FaceTime his family and friends again on his own will. He is excited to talk to friends that visit us in our home!

Eric was saying 2-3 words at a time when communicating with us prior to starting TAP.  Often times, we could not read between the lines because he would leave off words needed to understand what he was telling us. After a month of attending TAP, he is speaking in simple sentences more often. We can understand what he is relaying to us more often!  When I say this program is life changing, I mean it from the bottom of my heart! We are all overjoyed with his progress in one short month!

Eric attends four TAP sessions a week. The encouragement given by the facilitators encourages him to speak freely and make efforts to communicate without feeling stifled. His individual needs are met and tools are provided when he needs extra support with communication. He participates in real life discussions about topics that interest him! We discuss what he talks about in his classes as a family after his sessions and are thrilled with his enthusiasm to share. We had not experienced this desire to share in eight months prior to TAP.

We weren’t sure how to help Eric prior to getting involved with TAP. Maura has given us tools to use at home, such as key word outlines to help him communicate smoothly. I can’t tell you how many times Eric has thanked me for giving him an outline to speak. The real thanks goes to this program! It truly has forever changed our lives! We can’t wait to see what is in store for Eric in the future! There are truly not enough words to express our gratitude to Maura and all of the facilitators! Thank you!! ❤️

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

When one is initially introduced to the “rehab therapies”, they are identified as PT, OT, ST. (Of course we know there are many other health and wellness specialties that assist in stroke/brain injury recovery). Other than the possibility that someone in their family experienced a knee or shoulder injury, a broken hip or the like, the knowledge of these therapy disciplines and how they interconnect is often a mystery. Some will oversimplify the role noting that PT works on the lower extremities, OT works on uppers and self care tasks and the speech therapist helps with swallowing and speech. In actuality, the assessment and programming of each of these therapies is based on solid anatomy and physiology knowledge, an understanding of movement and the reliance on the amazing habilitation and rehabilitation powers of neuroplasticity.

There is, as you can tell, a kindred respect and interdisciplinary compliment between the therapies that come together to help guide an individual through the rehabilitation journey. So, naturally, when I had the honor of meeting Tony Barger after his stroke this year, I appreciated his perspective now being on the other side of the hospital bed. As you will hear, Tony is an Occupational Therapist and an individual whose career allows him assist in decisions about rehabilitation benefits for individuals walking this path.  I could instantly hear how his processing of this health event had given him new focus and a sense that he could impact the field in a different way based on his experience.  

The Group Leaders and myself felt inspired by the passion in Tony’s voice, but it has been watching the impact of his understanding on the other TAP clients that has been truly remarkable. Tony’s leadership through gentle, empathetic listening is only outdone by this encouraging direction in conversation and connection. I have a feeling that Tony’s stroke and subsequent experience with aphasia will result in a role at TAP that will guide, comfort and motivate for years to come.

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Tony Barger

 

 

It has been a blessing to discover the Triangle Aphasia Project.  From the incredible Speech-Language Pathologists and SLP students facilitating the groups to the survivors and their caregivers who offer ongoing messages of support and encouragement, everything that TAP stands for has been a “breath of fresh air” during my own stroke recovery.  I’m thrilled to have found TAP and know you will feel that way too!

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

I have worked in the field of Speech Pathology for many, many years and my decision and commitment to focus on aphasia brought me the gift of connection with like minded professionals, passionate about making a true difference in the lives of people robbed of the most important aspect of our being, communication. 

Truth is, people who enter this field are some of the most compassionate, empathetic and creative individuals I know. 

When I started TAP in 2003, I had incredible support and encouragement from colleagues in hospitals, rehabilitation programs and universities. They assisted in the organization and creation of materials, sharing ideas for programs and cheered us on as we launched new groups, held fundraisers and continued growing our mission. But they didn’t stop there! TAP enjoyed collaborations that were essential in “getting the word out” and advocating for people with aphasia and their families.  We are so very grateful for the trust that the Rehabilitation Professionals in our community (and the Speech Pathologists, in particular) have shown us. 

Today we are blessed to hear from one such superstar SLP, a colleague that defines person/family centered therapy and has patiently and confidently supported TAP throughout the years. Cheria Hay tells us her story of TAP involvement and while it’s humbly modest, I’d like to shine the light where it belongs. Cheria gets to know her patients; she learns of their goals and never dissuades their hope; she listens and counsels; she reaches out for resources and insures they are connected; she understands neuroplasticity and utilizes best practices; she cares. A lot.

As excited as we are that Cheria has agreed to share her story of TAP for these 12 Days…we are even more thrilled that she has recently accepted a position on our Board of Directors!  Thank You Cheria for sharing your time, talent and expertise.  

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Cheria Jannell Hay

Those of you who work in healthcare can relate to the fact that work does not end when you clock out at 5:00.  I look at the people I serve as family and connect to them on a deeper level.  So, when I’m at home and see programs, books, or events that might benefit a person, I make notes and connect families to that.  Our patients and families are trying to live their best life and return to some sense of normalcy. Naturally, as a therapist I want to nurture and support that; however, there are times, when you are left feeling powerless; with thoughts like, “What I am doing is not enough.”   A previous 12 days of TAP submission really spoke to me…because I too had no answers when patients asked, ”Where do I go from here?”, “What’s next?”, “How do I do “life” with aphasia?” 

However, while completing my orientation at WakeMed, a fellow speech pathologist asked me, “Cheria, do you know about TAP?”  Karen Sprung spoke with such enthusiasm about the Triangle Aphasia Project, affectionately known as TAP.  I was excited to know that such a wonderful community resource existed in the Triangle area and beyond.  A group that has literally bridged the gap between intention and purpose, to actively engaging the person living with aphasia, as well as their families; was here in my backyard. I learned that TAP actually met in the same building where I treated outpatients in Clayton.  So, one day, I walked over and introduced myself to group leader, Heather Garrabrant, who warmly welcomed me and answered my many questions. Heather introduced me to Maura, an angel walking among us, and the rest is history.   

I was not only able to learn the process of referring clients, but they welcomed me into group sessions to learn how sessions were done, how they connected as a group, and how they empowered one another. There is truly a family approach to therapy and the love, support, and respect you feel in a TAP meeting is palpable. I have witnessed the positive impact TAP has on the families I serve and the value they place on PEOPLE and FAMILY. When families say, “Thank you so much for introducing me to TAP,” it solidifies what I already know 1) TAP consists of a selfless group of people making a difference in people’s lives and 2) I will forever be a supporter and one of your biggest fans! 

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

All TAP clients begin their relationship with our organization with a brief consultation, currently on Zoom due to the pandemic.  This initial meeting offers an opportunity to explain TAP services and programs, but more importantly the chance to get to know an individual whose life has been altered by the presence of aphasia. I exit every meeting with an understanding that without their having suffered a stroke, a brain injury or other neurological change, I would not be given this chance to know them. It often feels like a mixed blessing as I learn of their personal passions, work in the community and purpose in vocational and avocational pursuits. I hate that this is the path for me to know them, but I am changed by their impact on me and our program.

I remember having this feeling after meeting Dorothy and her family on our Zoom consultation. It was easy to imagine Dorothy in her role as a teacher, a mentor to so many. I felt excited for her to bring this energy to our groups, for her to achieve her goals by connecting, and yes, by teaching. 

Today, you will read the story of a caring woman and an engaged family who searched for answers and found what is often the best kind of therapy…reading, listening and talking about something dear to one’s own heart. TAP’s Bible Study may be a venue for practice, but you will undoubtedly agree…it’s power is in it’s people. Thank you for sharing your story Dorothy and Carrie!

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Dorothy Belcher (as told by her daughter, Carrie Nichols)

April 2, 2021, this day changed my mother, Dorothy Belcher’s life in so many ways.  She had just returned to home, after visiting my husband and I, in Durham, NC for a few weeks.  At some point during the night, she suffered a stroke and the life that she had known changed drastically. As a result of the stroke, she has aphasia and has difficulty communicating. 

Prior to the stroke, my Mom was very active in her hometown of Plymouth, NC.  She served as the Assistant Superintendent of Sunday school, 4-H leader, Youth Leader and Sunday school teacher at her church.  She also served as a secretary to a local Women’s ministry and volunteered weekly with the Lunch Box, a free lunch program for the community.

My mom was rushed to the hospital, where she spent several days. After her release, she began physical, occupational and speech therapies. While she worked through her therapies, my family and I began researching to find any additional information we could find on strokes, aphasia and support groups.  During my first search session, the Triangle Aphasia Project rose to the top of my search results. I began exploring the website and was excited to find that it was a local group.  During my mother’s first speech therapy session, her speech therapist enthusiastically recommended TAP and we immediately got involved.

We had been looking for a program to help Mom continue her study and love of God’s word. TAP bible study quickly became her favorite session. She looks forward to attending the Wednesday TAP session.  She often spends time on Monday and Tuesday, studying and preparing for the Wednesday session.  My family and I help her with her study, so we now have our own family bible study time as we discuss the scripture for the week.

Maura Silverman, Julia Canavan, and the entire TAP family have truly been a blessing to us. The continued speech therapy, the supportive environment for caregivers, the opportunity to learn more about aphasia and strategies to help Mom has been a God send!

My mother’s journey may be quite different now but God is still in control.  I wholeheartedly believe that God placed TAP in my mother’s life to help strengthen her faith, strengthen her spirit and give her the support she needs to continue her life of service.

Thank you God and Thank you TAP!

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

The diagnosis, the questioning, the searching, the connecting, the understanding…that you are NOT alone. Whether an individual’s aphasia is the result of a stroke, a traumatic brain injury, brain tumor, infection or one of these insidious, frustrating neurological impairments (i.e. PPA/FTD)…the process, of what a dear friend/TAP client calls “discovery”, is much the same.  It reminds me of the the legendary work by Elisabeth Kübler-Ross and her identification of the five stages of necessary grief: denial, anger, bargaining, depression and acceptance.  This framework and variations of it, are represented as well in the experiences of loss for individuals diagnosed with aphasia. 

There was a time, certainly as I recall in the beginning of my career as a Speech Language Pathologist, that individuals were handed the diagnosis of aphasia with little explanation, and even less hope. The structured, clinical and medical model had inherent timelines and used words that are banned here at TAP:  “plateau” and “can’t”. Therapists were frustrated by the restrictions of funders and clients/families were frustrated by the lack of options.

Fortunately, as the social, pragmatic and life participation approaches formed, the opportunities for discovery, connection, continued stimulation and engagement also rose to the foreground.  In today’s story, we hear from a gentleman whose life purpose was to guide, support and counsel individuals and couples struggling with life’s challenges.  Now, Bill Campbell had to make choices, had to find positive and healing ways to deal with a diagnosis of aphasia, that would rob him of language, but NOT of what he had to say! I know you will be impressed by his grit, determination and yes… his faith. 

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Bill Campbell

I was diagnosed with Primary Progressive Aphasia (PPA) in February 2020 and this diagnosis is the biggest battle in my life. Aphasia includes four domains that affect your life: speech, hearing/processing words, writing and reading. I’m a Licensed Marriage and Family Therapist (LMFT) but I stopped providing counseling services because aphasia impacts my ability to talk and process words when I’m talking to others. I loved counseling couples and families and God blessed me to help people when they were facing family conflict. My life was fulfilled, and I believed I was on the right path and that God was directing my steps.

I worked with married couples, families, and pre-marriage couples to address relationship problems. My wife and I were Directors of the Marriage Ministry at our church in New Jersey. Also, God gave me an opportunity to receive M.Div. and D. Min degrees in Pastoral Counseling. In addition, I received an Ed.S. degree for Marriage and Family Therapy. With His grace, I passed the LMFT board examination.

After the diagnosis, I had a conversation with God. I was complaining about why He would allow my health circumstances to shut down my ministry. God did not hesitate in His response. I didn’t hear God’s voice audibly and I didn’t receive His message when I was reading the bible, but His words clearly came to my mind: It’s not your ministry. It’s My ministry! On a macro level, I understood that it was God’s ministry because God provided me everything that I needed to assist others. But, on a micro level, I thought the ministry was mine which is a falsehood.

One of the important lessons I learned from being diagnosed with aphasia, is fighting falsehoods, such as you’re feel alone and God doesn’t care for your situations. Consequently, lies become stronger each day when you’re not demonstrating courage. I was in the war of my life and I needed help. One day, I researched aphasia online and found TAP support groups. I emailed Maura and she invited my wife and me to a zoom session to explain the program. Also, she sent me to the website with the weekly schedule for TAP support groups. I decided to join the TAP Bible Class. The Bible class leader, Julia, welcomed me to the group and I felt I was at home.

Before joining the TAP Bible class, I participated in two other Bible classes, but the TAP Bible class was the best because I was comfortable and the classmates knew about my struggles because they had similar circumstances. My speech therapist recommended that I write a journal about my aphasia story and I shared the journal with the TAP Bible classmates. After they read my journal articles, they encouraged me to move forward and supported me to write a book for married couples. Every Wednesday, I look forward to meeting my classmates during our Bible Study time together.

Also, I was an e-pal with the TAP Connections program and I connected with two UNC graduate students weekly. Connecting with these students was such an inspiration to me. I truly enjoyed working with them. I thank God that I found TAP and God put me on the right path… walking in His grace. TAP has motivated me and I look forward to joining other groups and maybe even volunteering for TAP in the future. The TAP organization provides positive support and is a lifeline for people who are going through their aphasia journey. No words can truly express the importance that TAP resources provide to aphasia clients and their family!

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From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A dozen years, a million tears, & a priceless gift.

A Note from Maura

As we gathered the stories for this year’s 12 Days of TAP, I was once again moved by the inspirational narratives and the reality that aphasia does not happen to a single individual, rather that the ripple effect of the communication challenge results in changes in roles, life plans and even simple dinner table conversations.  And as the days ticked by, I saw December 17^th looming…a date that as one of our clients families put so well was “the worst $@%&# day of my life.”  The memories from that day and the months and years afterwards served to change me to the core… as a person who served people with aphasia to being a person who loved someone with aphasia.

The further recognition that December 17^th, 2009 was a whole dozen years ago is simply impossible to believe. After all, just two years ago this week, we published “A Decade of Determination” and despite my dear sweet mother battling a respiratory infection at that time, we could not have known that just a month later, we would be saying goodbye.  Joan Marie Tyrrell English, the Sandra Dee/Florence Nightengale that I labeled her in my story (and that she got quite a kick out of, by the way) was called to her rightful place as our guardian angel… and the pain of that loss is as fresh today, as it was on that January afternoon in 2020.  Since her passing, we all have remarked at how difficult the pandemic would have been for this retired nurse who worried about everyone and everything!  We have felt peace that she did not suffer isolation from her children, grandchildren and dear friends. And we have realized something else.  We have realized the power of her gift.

This 10 year gift embedded in her aphasia (that was not to outshine her 70 years of a vibrant, selfless, passionate and loving life) was what she taught me and what changes in the focus of TAP were her contribution and thus… part of her legacy. Please take a few minutes to read the story of my mom, my hero.  

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Joan English

Once upon a time…it’s how all good stories begin, right?  Of course they do…and then they all end up with “happily ever after.”  Unless you are human, that is.  Because every story, every life, has triumphs and tragedy, celebrations and struggles, and the totality of the story results in a legacy that is unpredictable from the turn of the very first page.   

Joan English has always been, from my perspective, a combination of Florence Nightingale, Mother Teresa and perhaps Joan of Arc.  Big shoes to fill, I understand, but ask anyone who knows her and they will validate the many reasons why I saw her this way throughout my formative years.  She was, after all, born to serve others, nurse anyone and everyone who needed compassionate care and sacrifice without consideration of the impact on her own self.  She has also always been a prophetic and skilled writer…one who could invoke passion, self-reflection, and yes, even a little guilt, with her lengthy prose in the form of stories, journals and parental feedback letters! (If she ever gave up her career in nursing, I’m certain Hallmark would have opened a position for her in a heartbeat.)  As a Registered Nurse, she worked tirelessly in every position to ensure that her patients received everything they needed, even if they didn’t realize they needed it yet.  Her nursing nature continued beyond her retirement, as she would swoop in to save the day with relatives, friends and complete strangers with her gentle, reassuring voice and touch.   

And en route to provide this innate nursing care to her family on 12/17/2009, Joan suffered a massive left hemorrhagic stroke.  A PA State Trooper saved her life on I-81, and she began what would be a long and arduous journey, at Hershey Medical Center in the Neuro-Intensive Care Unit.  The continuum of care from acute rehabilitation, day treatment, outpatient therapy and involvement in TAP was all too familiar for me…almost routine.  Except that this was my mom.   

And the new perspective I gained from watching family members and her friends, medical providers, etc. navigate this journey altered the dream of what TAP was, and what it needed to become.  You see, since its inception, TAP had focused on individuals with aphasia…provision of ongoing programming that challenged the traditional therapy model and allowed individuals challenging, engaging and hopeful travel along this rehabilitation journey.  But what about the children and grandchildren? The out-of-state friends? EMS workers who came to rescue her from a seizure or a fall?  How were we assuring that the family, friends and community were well equipped with the tools to help a person with aphasia live successfully with aphasia?   

Our metamorphosis from Triangle Aphasia Project to Triangle Aphasia Project Unlimited was the result of another completely selfless gift from the woman who taught me everything I know about being a good person, a caring provider and a determined agent of change.  Truly, I used to call it “the great cosmic irony”, citing the unfair nature of aphasia striking down the gifted verbal and written voice of my own mother.  But it all makes sense… it’s as uniquely her as any chapter in her story.  You see, my mom has continued to help hundreds and hundreds of people through her own struggles for communicative access, her need for advocacy in the absence of vocal power and her ability to express the range of emotions with a coy shrug of her shoulder, a shy inviting smile and those warm Irish eyes.   She has changed the scope of our program, allowing us to expand to new and necessary service divisions and inspired innovative program additions that will impact the families dealing with aphasia for years to come. 

Anyone who has ever heard me speak or entertained me telling my personal narrative knows the great respect and admiration I have for my mom.  They have heard stories of significant health challenges (i.e. additional bleeds, seizures, falls, etc.) and remarkable comebacks.  They sit with me in awe at her determination, grit and consistently positive attitude.  They get it.  They see her purpose and are inspired by her story.  They understand, as I do, that this woman lost her language, but never ever lost her message. 

There are so many individuals who could rightfully add to this 10-year reflection, but I wanted to give voice to a few important people in her life.  

From Bob (Joan’s “baby brother”, 5 years her junior):

It has indeed been a Decade of Determination and Resilience on her part.  For those of us who love her, it’s been a Decade of Inspiration as well.  I have never heard her express anger about the consequences of her stroke and have marveled at her acceptance of the limitations that are imposed on her. 

The obvious impact of her aphasia on me and my family is the difficulty in communicating with her, whether by phone or in person.  She remains so mentally sharp and that makes the frequent inability to say what she means so frustrating.

Certainly not aphasia alone, but her aphasia and the other consequences of her stroke have more sadly impacted my family and me.  She was my wife’s premier caregiver and best friend, and I know my wife missed her terribly during the last 5 years of my wife’s life. Each of my sons has so many fond memories of your Mom and so much affection for her, and I regret that because of the limiting consequences of your Mom’s stroke, including aphasia, my grandchildren have no connection with her. 

From Joe (Joan’s first born and only son): 

Mom’s aphasia has presented challenges in the quality and duration of our interactions that involve back and forth communication — especially by phone. Mom has always been very involved and tuned in to all of our lives. Aphasia has turned those interactions into fragments of conversations or dead ends, as Mom struggles to access a word or get a point across. Sometimes she will eventually give up on it, saying “never mind.” I know it is in her mind what to say, but the word or question will not come out.  

We have learned so much about aphasia through TAP resources and watching Maura work with Mom. I have learned to be patient and encouraging when Mom gets stuck, rather than try to guess what she might want to say. I’ve learned that, although her first response to a question may be “no“, if I am patient, she may correct herself and give the answer she wanted to. 

I have learned that aphasia did not rob Mom of memory or access to music, so I will often start a phone call by singing a familiar song and listening to the lyrics come easily to her. I’ve also learned that aphasia did not lessen mom’s sense of humor and mischief. I always try to make her laugh when I speak with her, as her laugh is so natural and authentic. 

I watch my children use humor to connect with mom. She gets so much joy from a short telephone call or FaceTime communication. 

None of us take for granted those precious few minutes of a phone call. She ends every call by saying she loves me (usually to the moon and back). The feeling is mutual! 

Jane (the baby of the family, her other precious daughter):

10 years ago, our lives changed forever. Phone calls and desperate searching until we got word of where Mom was. I got to her side while she still had some words, or at least that’s what I remember.  She looked so scared, and I told her we loved her and that we were there. Acute care and family together got us through those first crucial days and then riding with mom in an ambulance to WakeMed. It was Christmas time – difficult, long and trying to celebrate the slow gains. It was yesterday, and it was 1000 years ago. 

I miss:

• This woman, a caregiver to all 
• No comparison: her kind, authentic, caring and forgiving nature 
• Her selfless nature 
• Her eloquence in speaking 
• Her long tear-jerking speeches at special meals 
• Her incredible love and sacrifice for her children and grandchildren 
• The model of a loving wife 
• Her journals written with her beautiful handwriting and sentiments, which allowed all who were fortunate enough to travel with her a rare gift of vivid memories 
• Her voice; her phone calls, her supportive conversation through the good and tough roads of life

What’s different is difficult for me and for my family. But her – the absolutely loving soul and person is there, and I am so incredibly thankful for her unconditional love and her new voice. I say those who meet her now will never know my mom, but her resilience, grit and sweet soul…. It transcends any physical/communication barriers. 

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

When I started TAP way back in 2003, I often referred to a famous line from a movie called Fields of Dreams.  The quote: “If you build it, they will come” seemed to reflect the amazing response by individuals with aphasia and the families that supported them.  The programs, opportunities to connect with others with aphasia, took off! The growth in the communities was truly remarkable, but what was even more empowering was what happened next.  It appears that the invitation to connect was broadened and that those who served individuals with aphasia echoed the need to gather with others of like mind and purpose! 

I went from leading every group across the Triangle, to welcoming Speech Language Pathologists from area hospitals, rehabilitation centers, and the community to join us in the mission of TAP.  Providers signed up to lead groups, became involved in committees and joined in every fundraising effort that we sponsored.  And it grew… it just continued to grow! TAP Group Leaders were inspired by these amazing TAP clients and the spokes (group programs at outside of the TAP hub) expanded.  Groups were being held in communities across the Triangle and then to it’s west, it’s east and so on. How blessed we have been that this trend, this invitation still echoes even in a time where programs needed to adapt…shifting to an online community 

Today’s story is written by one of our group leaders, Taylor Hickok.  Learn how she views the collaboration between providers who share a Life Participation Approach.  With almost 20 group leaders under the TAP umbrella, it’s certainly true …if you build it they ALL will come.

________________________________________________

Taylor Hickok:

Making Connections During COVID- How I Found My TAP Family

For those of you who don’t know me, my name is Taylor and I am head over heels in love with my job! I am a speech-language pathologist with a very special place in my heart for working with people with aphasia. My aunt, Millie, was diagnosed with Primary Progressive Aphasia (PPA) a few years ago. I have seen first-hand how isolating, confusing, and frustrating aphasia can be. Millie is an amazing woman who spent every Thursday evening for 15 years teaching me piano. She has inspired me to be the best speech therapist I can be (and to follow in her footsteps to teach piano on the side as well!)

My husband and I moved from Arizona to North Carolina in March of 2019. When we moved, I started my own private practice, Rehab Rising, because I saw a need for functional, meaningful, client-centered therapy for people with aphasia (aka the “Life Participation Approach”). I see clients with aphasia in their homes or online depending on their availability and preference. My goal is to eventually get a clinic and hire physical therapists, occupational therapists, and neuropsychologists to make Rehab Rising a one stop shop for stroke and brain injury recovery!

Before my private practice, I had worked in vocational rehabilitation (i.e. helping people with brain injuries and stroke get back to work), and then I did online tele-therapy with children at a virtual school for several years. I loved tele-therapy but wanted badly to get back to working with the population I was most passionate about- people with aphasia!

When I started Rehab Rising, I remember telling my husband, “Wow, I really love doing therapy online, but there aren’t a lot of online therapy opportunities for adults. I wonder if I could start that with my private practice.” My husband said, “It’s a cool idea but online therapy will never catch on.” Boy were we wrong!

When the pandemic hit in March of 2020, I reached out to Maura and asked to get involved with her new online TAP classes. She was kind enough to let me volunteer as a group leader. The day I ran my first online TAP group, I fell in love. The rest is history.

The past two years have been so difficult and isolating because of the pandemic, but also so full of blessings. Even though at TAP, we have been physically separated, we have been able to stay deeply connected with each other through our screens. I wouldn’t change the last two years for the world because the pandemic has allowed me to make connections with a group of amazing individuals who inspire me every day.

Now, Wednesday and Friday mornings at 10am are my favorite part of the week. I get to spend quality time laughing, talking, and connecting on Zoom with my TAP family. I am so deeply grateful this holiday season for TAP and all it has done for the aphasia community.

I wish all of you a warm and joyful holiday season! 😊

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

Reflecting on 18 years of service to the community, TAP Unlimited has welcomed, embraced, accompanied and lost many individuals with aphasia.  It’s a reality that reminds me that being called “A Family” is both a responsibility and a blessing.  I’ve watched clients as they became empty nesters, welcomed grandchildren, lost spouses, celebrated landmark anniversaries and gathered together in the best and worst of times. Yes, it’s heartwrenching to lose a family member, one that entrusted you with their story and welcomed you along for the challenges and triumphs they’d experience along the way. 

And every now and then, when you have filed away a chart, smiling warmly that you were given the opportunity to know them, you open your email to find a gift… the gift of their narrative.  Today’s story is just that.  A reflection on a life well lived and greatly loved, and a life that intersected with TAP after a stroke the same year that TAP was born. Leon Bowman was one of TAP’s first clients, but even as he regained so much of his communication, receiving comments like “Why do you come to TAP? You sound great!”, he didn’t stop attending TAP programs. His gentle, caring nature and welcoming smile was a staple in our Durham group for almost two decades.  His daughter shares her memories of TAP and of her sweet father-daughter bond. And we are all so grateful for that!

________________________________________________

Leon Bowman (as shared by his daughter, Tamara Bowman)

I’m offering my thoughts a little late, but they have not faded despite the years. Eighteen years ago, while at work as a physician, I received a call that would change my life forever, but would change my Dad’s life even more.

I was given the news that my father had suffered a large temporoparietal stroke (affecting the language center). He was in the neuro-ICU and ultimately, regained most of his ability to understand spoken language, but was left with expressive aphasia, making it difficult for him to speak his thoughts. I watched helplessly as my Dad struggled to communicate with his family and make his needs known, and as my mother fought to take care of him and stay strong for all of us.

Being a physician, I felt like I should be able to do something to make things better, but it just didn’t work that way. He began speech therapy and through his therapist was introduced to TAP.  I met Maura when she came to my parents’ home and soon afterward, my dad began attending the support group meetings religiously.

I cannot fully express how much TAP has meant to our entire family over the years.  It gave my Dad a setting in which he felt comfortable being around others, without feeling self-conscious about his speech difficulties.  He looked forward to those get-togethers and continued to attend support groups long after his post–stroke improvements had plateaued.  I attended a support group meeting with him when visiting from out-of-state, and I will never forget how much I learned in that short time.  Up to that point, I had generally tried to finish my Dad’s sentences when he had word-finding trouble, thinking that I was helping him feel less frustrated.  But I learned that by completing his sentences and filling in words, I was indicating to him that I did not believe he could do it on his own.  I was not showing confidence in his ability to learn and grow and improve.  This knowledge transformed my interactions with Dad, and I was able to convey to him that I had confidence in him. 

He regained his language skills to the degree that if you did not know him, you may not even notice his occasional word-finding difficulty.  But he still depended on TAP for support and camaraderie, and that was invaluable.  He continued to attend meetings for over 15 years, until the pandemic occurred.  As I write this, my heart is breaking because my Dad passed away in July. I am still coming to grips with this enormous loss. 

The most amazing thing happened, because last week, I got a call from Maura, who is still following up on those long-time members of her “family”.  It was as if she had sensed our loss.  She shared her memories of both of my parents, and it was medicine for my soul.  It has given me an opportunity to express the gratitude of my entire family for the amazing support we have received for 18 years, from TAP. I know my Dad is looking down with approval of my sharing his (and our) story.

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

When I started the Triangle Aphasia Project, we assumed that most of the individuals referred for services would be those who had suffered a stroke or other traumatic brain injury.  But I’ll never forget one of the first visitors to our Grand Opening. Her name was Elizabeth and she had read the announcement in the local newspaper.  She arrived with said newspaper tucked firmly under her arm and proceeded to point repeatedly at the word “aphasia”, saying “I have that! I have that!” Her story, at the time, was unique…uncertain as to the insidious and frustrating loss of her words, she sought neurological evaluation and was diagnosed with Primary Progressive Aphasia (PPA); a type of Fronto Temporal Degeneration (FTD).  Considered rare, but proving less so after almost two decades of service, PPA became a common diagnosis for our organization.  So much so, that TAP has a special set of programs just for this population…TAPLinks.

TAPLinks provides a weekly program as well as a support group for those who love someone with aphasia as a result from PPA/FTD.  Unlike aphasia resulting from stroke, individuals with PPA/FTD understand that their journey is one of challenging losses, changes in all modalities of language (reading, writing, listening and speaking), and a slow onset of cognitive deficits. TAP hopes to provide a network (Links) within and outside of the TAP community to serve these families with a caring, compassionate and comprehensive manner. 

Today’s story allows an introduction to PPA/FTD with input from a couple who recently learned of this type of aphasia.  We are so happy to have Jim and Arlene welcomed into the TAP family early in their journey and commit to helping them along this road.  This wonderful couple has taken advantage of many of TAP’s offerings!  

________________________________________________

Jim Baker

From Jim:

My wife, Arlene, and I retired from positions in higher educational publishing. We were on track to use our time traveling together, but about two years ago I began to experience communication difficulties. My primary care physician directed me to the Neurology Department at Duke. Testing revealed I didn’t have a stroke, but I was diagnosed with Frontotemporal Degeneration and Expressive Aphasia. What a shock!

From Arlene:

In hindsight there were signs of Jim’s condition: mispronunciation of words, difficulty concentrating, losing his train of thought in conversation. Fortunately, Duke Neurology led us to speech therapist, Sarah Stidham, who told us about TAP. We contacted Maura Silverman and were invited to participate in TAPLinks discussion group. Because of COVID concerns the group, facilitated by Kaylea Nicholson, has met on Zoom which worked out perfectly for us. Jim has always been an excellent student and preparing for this group meeting has given him something not only to study for, but also the opportunity to share memories and conversation with other participants and their caregivers. Now, we both look forward to our Monday TAP session.

I also recently took the “Learning to Speak Aphasia” session, and learned so much. I started implementing the communication strategies with Jim immediately. We are so thankful for all the resources TAP provides.

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information

A Note from Maura

TAP Unlimited, now in it’s 18th year of service, has focused on the individual with aphasia, their family/friends and the community. It is within these service divisions where we recognize the uniqueness of every situation and the relationships that have been impacted by the presence of aphasia. The terms carer, care partner, care giver, support person, etc. only scratch the surface of the role that a significant person has in one’s life, as these individuals may be a spouse, parent, sibling, friend or child.

2021’s inaugural 12 Days of TAP story reflects a relationship that I can relate to in a very personal way…that of a mother-daughter connection. Saadia’s mother, Mona, suffers from aphasia after valiant battles with cancer. In these years of struggle, Saadia and her entire family gain invaluable lessons in grit, determination and resilience. The respect and admiration that Saadia reveals as she reflects on this journey so far is more than admirable; it is evidence that the proverbial apple doesn’t fall far from the tree. Saadia inquiries, searches, advocates and actively pursues opportunities to assist her mother and in doing so, reveals her mother’s gifts to her character. 

I hope that reading her story today, as we launch this year’s 12 Days of TAP, you are empowered to pave this recovery road by your own insistence on comprehensive, compassionate care. And know that, without a doubt, you are not alone.  

________________________________________________

Mona and Saadia Smith

My Mother, Mona, was diagnosed in 2013 with breast cancer. After a double mastectomy and chemotherapy, she began her recovery back to normal. 

She went back to work at her government job for over 25 years where she supervised a team of people in her field of Criminal Justice. She remained active in her sorority. Visiting and playing with her two grand kids were always a treat. My Mother even joined a few boot camps to become physically fit. With the encouragement from her husband, she was determined to make her New Normal even better.

Then at the end of 2018, she began having intense headaches for days. Not soon after, she found out that she had a very rare brain tumor. Extra Skeletal Maxiod Chondrosarcoma. Her doctors were phenomenal and removed the tumor in 2019. Her treatment was progressive, a learning curve due to it’s rarity. At the time, her physical recovery was most important and was prioritized above everything else.

Let’s Fast forward to early 2021, where we are now in the midst of COVID. The rare tumor unfortunately reared its ugly head, once again. We have learned the nature of this aggressive beast and approached treatment more aggressively too. It was removed and we pray that it will never come back.

The location of the brain tumor has done some damage to the left side of her brain. This damage affects movement and feeling on the right side of her body. It also affects her language. Her processing and understanding has been deeply impacted. This has been detrimental to her confidence and social interactions.

After desperation to help her find her New Normal, once again, Google brought us to the Triangle Aphasia Project. TAP has been nothing but a Godsend to my Mother. TAP adds another dimension to her recovery that we did not know she needed. My Mother actively attends TAP virtual groups where she builds her confidence in language, processing and understanding among friends who are fighting the same fight of Aphasia. We are now connected to resources that will further her speech development. Because of TAP, our family is continually learning the best way to communicate so that she feels empowered to feel like the woman she is.

We are Blessed to have found the Triangle Aphasia Project. My Mother, Mona is now motivated to recover physically, socially and spiritually because of the new found confidence that TAP is providing. The support of this organization is unmatched and we believe that my Mother will find and love her New Normal.

______________________________________________________

From the Home Office

12 Days of TAP provides you, our Triangle Aphasia Project Unlimited family, an opportunity to embrace the WHY of what we do. For 12 days, we share stories of those impacted by aphasia.

Aphasia can be a devastating impairment resulting in social isolation, depression and disengagement from the passions and purpose of an individual’s life. These stories demonstrate what happens when hope, determination, purpose and engagement are returned.

Our ability to provide accessible, affordable programming for individuals with aphasia and their families is a result of the generosity of our donors. Today, we ask that you continue supporting TAP by sharing these stories to build an understanding of life with aphasia and consider making a donation.

Thank you for your faith in our organization and for supporting the 12 Days of TAP!

Ways to Donate

• Text “tapholidays” to 50155 
• Visit aphasiaproject.org to make a one-time donation
• Join our Ice Breaker Club to become a monthly donor
• Donate on our Facebook Fundraiser and share with your friends
• Print and clip the form below and mail a check
• Make a donation of stock; email us for more information