An Inside Look at the Parkinson’s Extension of the MRRI Research Registry

The pioneering research led by investigators at Moss Rehabilitation Research Institute (MRRI) would not be possible without the many dedicated research participants who have contributed their time and effort over the years. As part of the Klein Family Parkinson’s Rehabilitation Center at MossRehab, established in 2019, MRRI and MossRehab have worked together to expand the MRRI Research Registry. The Research Registry is a list of volunteers who are interested in participating in research at MRRI, and it now includes individuals with a diagnosis of Parkinson’s disease or Parkinsonism. Emily Fannick and Katie Cornell are two staff members who are integral to the process of recruiting new research volunteers. In this interview, Emily and Katie share more about their roles, this new extension of the MRRI Research Registry, and research opportunities at the Klein Family Parkinson’s Rehabilitation Center.

What prompted the development of a new extension of the MRRI Research Registry for MossRehab patients interested in participating in Parkinson’s related research?

Emily: People with Parkinson’s disease and related disorders frequently participate in programs at MossRehab. Advancing the scientific and clinical communities’ understanding of evidence-based neurorehabilitation for these individuals has recently emerged as a new but expanding area of research interest and was identified as critical to MRRI’s mission. Since its beginning nearly 20 years ago, our research registry has enrolled about 4,000 individuals who have experienced stroke (cerebrovascular accident; CVA) or traumatic brain injury (TBI). We are confident that expanding the MRRI Research Registry to include individuals affected by Parkinsonism will be a successful way to help researchers identify volunteers interested in learning about opportunities to participate in Parkinson’s-related research.

How is the Klein Family Parkinson’s Rehabilitation Center unique?

Katie: The Klein Family Parkinson’s Rehabilitation Center exemplifies MossRehab’s culture of research integrated with clinical care by focusing on improving the quality of care for individuals with Parkinson’s disease and related disorders through innovative approaches in rehabilitation. By expanding the MRRI Research Registry to include individuals with Parkinson’s disease and related disorders, the Klein Family Parkinson’s Rehabilitation Center will allow a variety of Parkinson’s-related research opportunities to flourish. In this way, it empowers patients from across the MossRehab network to help shape future care by participating in research studies designed to help better understand Parkinson’s disease and its treatment. This supports the central mission of the Klein Family Parkinson’s Rehabilitation Center “To provide evidence-based care by increasing our understanding of the effectiveness of current rehabilitation treatments while promoting greater synergy between clinical and research staff to increase collaborative innovation.”

What are some of your key responsibilities within the Parkinson’s extension of the MRRI Research Registry?

Katie: When individuals express an interest in becoming a member of the Research Registry, we facilitate this by walking them through the informed-consent process and enrolling them in the Research Registry so that they may be contacted about future research opportunities. We also help to raise awareness of this new extension of the MRRI Research Registry by holding information sessions at MossRehab outpatient centers. In addition, we develop and modify recruitment and enrollment procedures specifically for the needs of those affected by Parkinsonism and maintain the information in the Research Registry (e.g., updating contact information for Research Registry volunteers).

Every study is different, but can you give a general overview of the kinds of research studies that are conducted?

Emily: MRRI is home to approximately a dozen laboratories that have specific research focuses, with Parkinson’s and related disorders being one of them. Research studies are designed to investigate different areas of functioning within these patient populations, such as problems with speech and language, attention, memory, movement, and emotional well-being. Researchers also study which treatments work best in these areas. Patients may complete assessment batteries; participate in speech, language, movement, and/or cognitive tasks (e.g., talking about pictures and videos, imitating actions); and/or answer questions about how their lives are affected by their symptoms of Parkinsonism. Experiments may also make use of cutting-edge technologies such as immersive virtual reality and interacting with robots.

What is the process like for a patient who wants to join the Research Registry and the steps someone would go through to participate in a Parkinson’s-related research study here?

Emily: The process for an individual to volunteer to be a participant in the Parkinson’s extension of the Research Registry is twofold. After expressing their interest, the individual would first need to complete the informed-consent process to join the Research Registry. MRRI researchers are then able to search the Research Registry to identify and contact individuals that may be eligible to participate in their research studies. If the Research Registry member is eligible and interested in participating in a particular study, a second informed-consent process specific to that study will take place. The second informed-consent process provides the participant with details about the study (e.g., study duration, examples of tasks involved, and the risks and benefits of participation) and provides an opportunity to have their own questions about the study answered. It is really that simple! This same process applies to stroke, TBI, and Parkinson’s-related research. The informed-consent process, as well as all aspects of the Research Registry and any study that takes place at MRRI, is conducted with Institutional Review Board oversight.

For people who are considering getting involved in research, what are some of the benefits?

Katie: Getting involved in research allows people to contribute directly to science. Researchers rely on volunteers to participate in research so they can learn more about rehabilitation, Parkinsonism, and the brain, which may help improve rehabilitation services in the future for all of those living with the effects of neurological disease or injury.

What are some of your goals for the Parkinson’s extension of the MRRI Research Registry?

Emily: The overall goal for Parkinson’s research is to continue to develop best practices for treatment. For the Parkinson’s extension of the Research Registry specifically, we are really focused on streamlining our procedures to ensure we are reaching as many people as possible that might be eligible and interested in joining the Research Registry.

Katie: We also continue to strengthen our relationships with clinicians across MossRehab outpatient centers to raise awareness of this new extension of the Research Registry as well as all of the research opportunities at MRRI and MossRehab.

What do you like most about what you do?

Katie: The best part of what I do is interacting with potential Research Registry participants and their family members. I have met so many interesting and friendly people that are eager to get involved!

Emily: I have two favorite parts of my position that make working as a Research Registry Recruiter very special and rewarding. The MRRI Research Registry staff, researchers at MRRI, and all therapists, clinicians, and physicians at MossRehab are very passionate about what they do and why they do it — to help others. That passion resonates with me and motivates me in my own work every day. Secondly, working with patients and their families one-on-one really puts into perspective the benefits that research can deliver for the patient populations that we study.

July 2020 Updates from MRRI

Last month, MRRI scientists continued to make progress remotely on a variety of research projects and to engage virtually with the broader community. We published a blog article highlighting newly published criteria to care for patients with disorders of consciousness, as well as an article shining the spotlight on the generations of Klein family members who have supported MRRI, MossRehab, and the Einstein Healthcare Network.

In addition to being sought-after experts in their respective research areas, our scientists are also important contributors at a national level in advocating for science and medicine. MRRI Director and Director of the Human Motor Recovery Laboratory, Dylan Edwards, PhD, was recently featured in an article in Philadelphia Magazine discussing the challenges that Black scientists continue to face in securing funding from organizations like the National Institutes for Health (NIH). In this article Dr. Edwards describes potential factors that may contribute to a lower likelihood of funding success in Black or other minority applicants and important steps that should be taken to remedy these disparities.

Further, John Whyte, MD, PhD, Former MRRI Director and Founding Director of the TBI Rehabilitation Research Laboratory was interviewed by the Association of Academic Physiatrists about his dedication to advocacy throughout his career. Dr. Whyte shares what motivated him to become involved in advocacy efforts, challenges he has encountered, and why he believes it is important for physicians to take an active role in these national conversations that impact the patients they serve.

In some cases, the perception that scientists are somehow different from others may be a barrier in fostering connections and conversations between researchers and our communities. To help overcome this barrier, Dr. Umesh Venkatesan, PhD, Institute Scientist and Director of the Brain Trauma and Behavior Laboratory, was recently featured on the People Behind the Science podcast. Through this program, Dr. Venkatesan shares his research on aging with moderate-to-severe TBI in a way that is interesting and accessible to a wide audience, and he gives the public insight into what life is like as a scientist.

We feel honored and privileged to have the opportunity to continue to dedicate our voices to reducing disparities, promoting equity, and fostering connections between scientists and the people within our own communities and around the world.

Spotlight on the Legacy and Contributions of the Klein Family

It all began in 1952. When Albert Einstein Medical Center was created, Julius Klein was among the community leaders in Philadelphia who came together to form the first Board of Trustees. Over the years, Julius continued his service on the Board of Trustees, and later held positions as President, Chairman of the Board, and Lifetime Chairman. His enthusiasm for the Einstein Health Network and the services it provided the community was contagious. Other members of the Klein family soon joined Julius in supporting Einstein, including Julius’s wife Eleanor, as well as his siblings, nieces, nephews, and his own son Robert. For five generations now, the Klein Family has been dedicated to working with the Einstein Healthcare Network to make a difference in the health and wellness of patients. Five generations of Klein family members have been involved with Einstein in different roles, serving as executive leaders, board members, volunteers, ambassadors, philanthropists, and dedicated supporters.

In addition to their legacy of giving back to their community through service to Einstein, Klein family members have provided many significant gifts to support the important work being done across Einstein Healthcare Network. The legacy of the Klein family is found in the many capital projects which are both a testament to their love of Einstein, its history, and patients, like the  restoration and re-dedication of Einstein’s historic Henry S. Frank Synagogue and the design and construction of  the Klein Family Garden, a welcoming space for patients, families, and caregivers, as well as the Samuel and Minna Daniel Klein Professional Office Building which houses some of Einstein’s exceptional health care programs like the Center for Advance Liver Disease and Transplantation.

Einstein Healthcare Network and MossRehab are fortunate to be affiliated with the Moss Rehabilitation Research Institute (MRRI), founded in 1992 by Myrna F. Schwartz, PhD, and John Whyte, MD, PhD. The goal of the Institute was to consolidate research activities happening at MossRehab and cultivate new initiatives in rehabilitation research. Not long after MRRI began its work, Judy Klein Franken, daughter of Julius Klein, was diagnosed with Parkinson’s disease. She realized the treatment options available at the time (primarily dopamine replacement therapies and deep brain stimulation) were limited, and she wanted to be part of the effort to develop new and innovative treatments for Parkinson’s disease. Judy began dedicating her time to volunteering as a research participant and, to date, she has participated in 17 research studies.

More recently, Judy’s nephew Peter Klein was also diagnosed with Parkinson’s disease. When Peter realized that MRRI and MossRehab were interested in developing a groundbreaking new model of integrated Parkinson’s research and care, he quickly took action. Peter, Judy, and other members of the Klein family came together to bring this initiative to fruition.

In 2019, the Klein Family Parkinson’s Rehabilitation Center was established at MossRehab as the first integrated rehabilitation program to use research-supported clinical interventions for rehabilitation in people with Parkinson’s disease. Within its first year, the Klein Family Parkinson’s Rehabilitation Center has made tremendous strides integrating innovative research from MRRI with world-class rehabilitation services from MossRehab to help people with Parkinson’s disease remain active and maintain a high quality of life. To that end, we have combined efforts with MossRehab to establish a database of patient volunteers who are interested in participating in Parkinson’s-related research at MossRehab, modeled after their successful stroke and TBI Research Registry. Currently enrolling research participants, this effort creates valuable opportunities for patients to participate in pioneering research studies led by investigators within MRRI. In addition, a major emphasis of the Klein Family Parkinson’s Rehabilitation Center is to facilitate evidence-based care through in-depth analysis of current clinical practices and their impacts on patient outcomes throughout Einstein Healthcare Network.  

We are grateful for the generous support provided by the Klein family which has allowed us to establish the Klein Family Parkinson’s Rehabilitation Center to advance scientific and clinical knowledge about Parkinson’s disease and serve as an important resource for patients and their families. The Klein family’s philanthropic contributions were further recognized in 2019 with receipt of the Multigenerational Family Achievement Award from the Greater Philadelphia Chapter of the Association of Fundraising Professionals. Their nomination was initiated by Einstein Healthcare Network. Looking forward, the legacy of the Klein family at Einstein continues as we are proud to have Julius’s great-grandson Sam Klein serving as a member of the Einstein Healthcare Network Board of Overseers.

Donations of all sizes help support important research at MRRI as well as clinical activities across Einstein Healthcare Network. Philanthropy and service are great ways to engage with your community, and the Klein family has shown how the spirit of giving back to the community can be a uniting force that spans generations.

June 2020 Updates from MRRI

A group of individuals sit around a table clapping to a beat.

June was National Aphasia Awareness Month, and our scientists and staff members had opportunities throughout the month to share their important aphasia research and help increase awareness of this language impairment that may occur after a stroke or other brain injury. The MossRehab Aphasia Center is well-known worldwide for exceptional research and treatment of aphasia, and we were excited to highlight some of the outstanding work being done there. We published blog posts on the history of aphasia research at MRRI and important contributions to the field by MRRI Co-Founder Myrna Schwartz, PhD, the Constance Sheerr-Kittner Conversation Cafés, and the Musical Mondays Program.  

Throughout the month of June, members of the Aphasia Center were involved in various presentations and outreach events. In case you missed any of these, we’ve included links below. 

In addition to shining a spotlight on our work on aphasia, we were excited to publish a blog post sharing the story of one of our research participants with traumatic brain injury and a post highlighting research on the role of sustained attention and effort in arm non-use in people with stroke conducted by Laurel Buxbaum, PsyD, MRRI Associate Director and Director of the Cognition and Action Laboratory. Further, MRRI Scientists were authors on three new research papers that were recently published or accepted for publication in peer-reviewed scientific journals.  

We are also pleased to congratulate Shailesh Katak, PT, PhD, on being awarded the Michael L. Berger Faculty Scholars and Artists Prize from Arcadia University. In addition to his appointments as MRRI Institute Scientist and Director of the Neuroplasticity and Motor Behavior Laboratory, Dr. Kantak is Assistant Professor in the Department of Physical Therapy at Arcadia University. This recent award recognizes his groundbreaking scholarly work in the area of motor control and skill learning.  

As we enter the second half of 2020, we look forward to continuing to make progress on research and sharing our innovative rehabilitation research with the scientific community and the public.  

The People Behind the Science Podcast Features Dr. Umi Venkatesan

Portrait of Dr. Vankatesan

In its most recent episode, the People Behind the Science podcast interviews Umesh “Umi” Venkatesan, PhD. Umi is an Institute Scientist at MRRI and Director of the Brain Trauma and Behavior Laboratory. In his interview, Umi discusses his research on medical and psychosocial risk factors that may contribute to outcomes and outcome trajectories after traumatic brain injury. He also shares his path to becoming a scientist at MRRI, from his very first psychology class in high school to getting a job offer and launching his independent research lab. In addition to academic topics, the podcast’s host Marie McNeely, PhD, explores Umi’s interests outside of science, including his passion for music, dance, culture, and cuisine.

You can listen to Umi’s full interview on the People Behind the Science website.

Criteria to Care for Patients with Disorders of Consciousness

Head shot of Dr. John Whyte

Rehabilitation after brain injury has traditionally required the active participation of the patient to learn new skills and ways of coping with their disability. As a result, for many years, patients with a disorder of consciousness (DOC – i.e., unconscious or minimally conscious) after brain injury, were typically excluded from acute inpatient rehabilitation and treated, instead, in subacute nursing facilities or in family homes with medical support. Recent research has shown that patients who are unconscious when they enter acute rehabilitation often show great improvement in function and participation before discharge. Moreover, their complex medical and physical problems are best managed by experienced brain injury rehabilitation professionals in specialized programs.

Clinicians and researchers within the Traumatic Brain Injury Model System (TBIMS), in collaboration with colleagues with similar interests from the American Congress of Rehabilitation Medicine (ACRM), seek to expand access to rehabilitation for DOC patients. However, since access has been restricted for many years, even facilities with substantial TBI rehabilitation expertise are not necessarily skilled in caring for patients with DOC. Thus, if rehabilitation access for this population is to expand, it is important to ensure that the necessary staff, resources, and skills are available to treat them.

Experts in DOC rehabilitation from the TBIMS and the ACRM have collaborated to develop consensus-based recommendations for the minimal competencies needed by programs serving this population. The 21 recommendations focus on skills and processes needed for diagnosis and outcome prediction, treatment, transitioning of care, and ethical issues. Recommendations are supported by research when available, and are accompanied by an “audit checklist” for program evaluation.

The recommendations are available in an article in the journal Archives of Physical Medicine and Rehabilitation with former MRRI Director John Whyte, MD, PhD, as a lead author.

This article was adapted from an article originally published in The MossRehab Traumatic Brain Injury Model System’s Spring 2020 Edition of Brain E-News.

WHYY Features the MossRehab Aphasia Center Musical Mondays Program

Roberta Brooks presenting in front of a screen.

Listening to music has been shown to engage multiple brain regions, and rhythm and music have been employed in therapies around the world for many years. Aphasia is a language impairment that may occur after a stroke or other brain injury, and the MossRehab Aphasia Center is a world leader in studying and treating aphasia.

The Aphasia Center has developed a program called Musical Mondays during which people living with aphasia come together to listen to music, share information and stories, explore different types of music, sing, and play musical instruments.

Philadelphia Public station WHYY recently interviewed Aphasia Center scientists, staff, and members in a segment on the Musical Mondays Program as part of its “You Oughta Know” series. As Aphasia Center Speech Language Pathologist Roberta Brooks explains, the goals of the program are “to provide opportunities for socialization, to allow people to share their love of music, [and] give people another forum for practicing communication skills and listening skills.”

The MossRehab Aphasia Center is a collaborative effort between MRRI scientists and MossRehab clinicians that helps to address the long-term communication and psychosocial needs of people living with aphasia. The Center provides outstanding treatment, resources, programming, peer support, and opportunities to participate in cutting-edge rehabilitation research.

Learn more about what music can do for people living with aphasia on the MossRehab Aphasia Center blog.

Recognizing Dr. Myrna Schwartz

In 1992, Myrna F. Schwartz, PhD, co-founded Moss Rehabilitation Research Institute with former MRRI Director John Whyte, MD, PhD. As head of MRRI’s Language and Aphasia Laboratory, she directed a multi-disciplinary research program dedicated to the study of aphasia and its treatment. Dr. Schwartz’ research was continually funded by the National Institutes of Health for over 30 years.

Dr. Schwartz is one of the world’s most influential researchers of aphasia. Over the course of her career, she’s collaborated with and mentored some of the brightest minds in language and aphasia research. She has published well over 100 peer-reviewed scientific articles and has directly or indirectly helped diagnose and treat hundreds of patients recovering from stroke and other types of brain injury.

Early in her career, Dr. Schwartz worked with renowned scientists Dr. Eleanor Saffran and Dr. Oscar Marin at Johns Hopkins University. Their work centered on advancing a cognitive neuropsychological approach to the study of aphasia and language. The basic idea was that intensively studying individuals with aphasia to identify which aspects of language are disrupted versus preserved can reveal the underlying neurocognitive architecture for language. By going a step further and relating specific deficits in individuals to where they have damage in the brain after stroke, scientists can draw conclusions about brain-behavior relationships. Schwartz’s pioneering research laid new groundwork for how to apply general models of cognition to understand aphasia and likewise use the study of aphasia to inform models of cognition.

As an Institute Scientist at MRRI, Dr. Schwartz was integral to establishing the Institute’s Research Participant Registry, which is a HIPAA compliant, research recruitment infrastructure that permits tracking individual research volunteers over time to study them again and again. At MRRI, the Schwartz lab oversaw the collection of an extensive battery of neuropsychological tests on a large sample of people with aphasia. This provided foundational data for studies using a ‘case series’ approach. Case series is a powerful investigatory method in which theoretical constructs are derived that best capture behavioral variability across participants. This work produced seminal papers co-authored with leaders in related scientific disciplines, including prominent cognitive scientist Gary Dell, PhD, at the University of Illinois at Urbana-Champaign. Dr. Dell and Dr. Schwartz’s research on large case series of people with aphasia advanced the two-step interactive theory of lexical access, a scientifically rigorous computational model that explained abilities for word production in a broad range of people with aphasia and normal speakers. This theory remains one of the most influential in the study of language production, with the original papers garnering nearly 1,000 citations collectively.

More recently, in collaboration with local scientists including Dr. Branch Coslett, MD, PhD at the University of Pennsylvania, Dr. Schwartz conducted a series of investigations into the neuroanatomical correlates of word production. These studies involved large groups of people with aphasia, and they used state-of-the-art imaging techniques to link damaged areas in the brain to specific deficits in word production. Essentially, this lesion-analysis technique permits users to map theory-informed components of word production to the brain. These ground-breaking studies were published in highly-regarded, influential scientific journals including Brain and Proceedings of the National Academy of Sciences of the United States.

One of Dr. Schwartz’ lifelong passions is helping people with aphasia and their caregivers live life to the fullest. To this end, Dr. Schwartz helped found the MossRehab Aphasia Center. One of the first in the country, the Center provides support for people with aphasia and their caregivers. Its mission is to enhance life participation of people with aphasia by providing social opportunities, advanced assessment, and interventions to improve personal and environmental factors. Today, there are many aphasia centers throughout the country, dedicated to helping people with aphasia maintain a high quality of life despite chronic language problems.

A major focus of Schwartz’ work was to develop theory-grounded approaches to treatment. Among her clinical contributions, Dr. Schwartz and her colleagues developed a treatment protocol called Mapping Therapy, which is used to treat agrammatic aphasia, and the Philadelphia Naming Test, which helps identify the type of aphasia a patient has and can measure recovery over time. She and her colleagues also developed MossTalk Words, an evidence-based computer-assisted treatment program that people with aphasia and other language disorders can use in their home to supplement traditional speech therapy.

Myrna F. Schwartz continues to be involved in aphasia research in an emeritus role from California. She provides ongoing mentorship to junior scientists at MRRI, and she is active in organizations dedicated to raising awareness of aphasia and providing life-long support to individuals with aphasia. Her many contributions to aphasia research and treatment have left a lasting impact on the field, and Dr. Schwartz’ legacy will continue to drive aphasia research at MRRI and around the world.

MRRI Participant Spotlight: Donald Thomas

Head shot of Donald Thomas

We recently caught up with Donald Thomas, who participated in research at MRRI. Donald sustained a traumatic brain injury (TBI) in 2001 as a passenger in a motor vehicle collision. Afterward, he found himself staying home more and getting less enjoyment out of life. When he learned about an opportunity to participate in a research project evaluating a treatment for anxiety and depression after TBI, he leaped at the chance. “I decided to volunteer for two reasons. First, I thought it would help bring me back into the world after feeling ‘boxed in’ after my injury. I also wanted to help others who are dealing with the same problems that I am.”

The treatment program evaluated in this study is based on Behavioral Activation (BA). BA is a treatment approach that encourages gradual, scheduled increases in rewarding activities. The theory behind BA suggests that depression and anxiety will diminish as individuals experience more enjoyment and accomplishment by increasing their participation in rewarding activities. Prior research has shown that BA is a particularly well-suited approach for activity restrictions due to medical conditions, such as TBI.

Amanda Rabinowitz, PhD, Director of the Brain Injury Neuropsychology Lab, is leading this ongoing randomized controlled trial. Participants are assigned to one of two 8-week variants of BA. One BA treatment includes a single face-to-face session with a therapist followed by weekly text-messages. In the other BA treatment, participants have weekly sessions with a therapist—6 in person and 2 by telephone. Both treatments incorporate mobile technology. Some participants download a smartphone app that they use to monitor their mood and activities, and all receive personalized text messages. Text messages either take the form of timely reminders of activities that have been scheduled, or “implementation intention” statements that are designed to help them recognize opportunities to participate in valued activities. At the midway point and again at the end of treatment, we measure participants’ depression, anxiety, and quality of life, their exposure to environmental reward, and community participation. We then follow-up with participants two months after they have completed treatment to learn whether or not they have continued using the skills and strategies they learned in treatment.  

BA resonated with Donald. Before his injury, Donald worked for the School District of Philadelphia as a teacher’s assistant in Pre-Kindergarten classrooms, a position he held for twenty-one years. He was also a trustee for his church and managed their finances. After his TBI, Donald’s life changed in many ways. For example, he no longer works outside of the home. “For some reason, I felt like I was out of the world. There was a comfort zone that I was in, but I needed to broaden my horizons.”

At the start of the study, Donald didn’t know what to expect, “Sometimes people treat you like a child when you’ve had a brain injury, but the people at MRRI made me feel very comfortable. They asked for my feedback and wanted to know how I was feeling.” Donald learned that his experiences were actually very common after brain injury. He began making plans to try new things, such as a trip to New York City. “I was paranoid to go by myself, [but] my study therapist helped me organize my thinking. I took a train to New York by myself, and I never would have done that before.”

Donald was excited to share his accomplishments with the study team, “even if I didn’t get everything accomplished, I could tell them I tried. They showed a lot of encouragement.” Months after completing the study, Donald still draws strengths from what he learned participating in the program. “That was one of the goals, spreading my wings a little bit. Participating in this study showed me that I could do it.”

Today, Donald finds joy managing his household, growing vegetables and flowers in his garden, and cooking – macaroni and cheese is his specialty. Donald continues to work for his church as a volunteer, and he helps with a program that brings prepared meals to those in need in the community. He is grateful for the research that is being done at MRRI. “If you have a physical ailment, people can often see it right away. A mental disability, like TBI or stroke, may cause a lot of pain, but you don’t see it. However, it’s just as important as suffering with physical pain. The research at MRRI is important because they are addressing issues that people can’t see.”

Because of the dedication of research participants like Donald, scientists at MRRI are able to make great strides in understanding how people recover following traumatic brain injury and in developing new treatment approaches. We are currently halfway through this clinical trial, and we look forward to analyzing the data and reporting our results in 2022.  

Spotlight on the Constance Sheerr-Kittner Conversation Cafés at the MossRehab Aphasia Center

Aphasia impacts more than two million people in the U.S. alone. During National Aphasia Awareness month, MRRI is pleased to highlight the outstanding scientists, clinicians, and staff of the MossRehab Aphasia Center. The Center brings together leading researchers and expert clinicians within the region’s only top 10 U.S. rehabilitation hospital to address the long-term communication and psychosocial needs of individuals with aphasia. Through our Center, we provide individuals with aphasia and their co-survivors with resources, support, treatment, and opportunities to participate in research.

In collaboration with community members with aphasia and their families, Myrna Schwartz, PhD, and Ruth Fink, MA, CCC-SLP, founded the Center in recognition of the fact that lifelong recovery is possible and that social rehabilitation is a crucial part of that process. Opened in 1996, it was the second aphasia center in the U.S. and the third in North America. Through the Advanced Clinical Therapy Program, the Activities Center, and ongoing innovation in research, the MossRehab Aphasia Center provides a spectrum of services in a supportive and inclusive environment. 

The Constance Sheerr-Kittner Conversation Cafés are a cornerstone of our Center’s programming. A small, but growing, evidence base indicates that those with aphasia who participate in conversation groups experience increases in both functional communication effectiveness and psychosocial wellbeing or quality of life.  Funded by an Albert Einstein Society Research Grant, a longitudinal pilot study examining these outcomes with new Conversation Café members is in the final stages of data collection.  During weekly Conversation Cafés, people with aphasia engage in sharing stories, daily experiences, and topical discussions and debates. These meetings are facilitated by a speech-language pathologist and provide an environment conducive to practicing communication strategies. Most importantly, Conversation Café participants have the opportunity to develop friendships that extend beyond the physical boundaries of the Center. 

Maintaining these relationships is even more critical in the face of the COVID-19 quarantine, which can only serve to exacerbate the social isolation experienced by many people with aphasia. In recognition of the need to continue providing this critical support, even from a distance, the Center has transitioned to virtual group meetings. Under the auspices of the United States Department of Health and Human Services guidelines for telehealth during COVID-19, MossRehab Aphasia Center speech-language pathologist, Karen R. Cohen, MSPA, CCC-SLP, facilitates virtual conversation groups five times weekly, as well as a virtual Talking Book Club, providing a venue for members to continue socializing, share their experiences, and receive essential language and communication practice. In collaboration with Center director, Sharon M. Antonucci, PhD, CCC-SLP, our Outreach Administrative Coordinator / Member Liaison Nikki Benson-Watlington has created aphasia-friendly pictorial guides demonstrating how to download and access the virtual platform as well as suggestions for maintaining security online. Ms. Benson-Watlington reached out to every member individually to confirm they were able to access the technology and to walk them through any necessary problem-solving. 

Feedback thus far demonstrates the importance of keeping these connections strong. 

“Thanks so much for this morning. I think the Zoom went very well and although [he] doesn’t talk too much; I know he is really delighted to see everyone. Please stay well.”  – MossRehab Aphasia Center Co-survivor

“Wow. Today was great! [He] had a real nice time. And, as always, I enjoyed it too.” 
– MossRehab Aphasia Center Co-survivor

“This is just outstanding. I love that we can do this. You have no idea what this means to him, and us, really…” – MossRehab Aphasia Center Co-survivor

The MossRehab Aphasia Center team is dedicated to embracing technology to address the needs of our community and deliver innovative programs to people with aphasia. These statements from co-survivors are a testament to the impacts that resources and support from our Center are providing participants during this difficult time. Having been in the vanguard of Aphasia Center programming, the MossRehab Aphasia Center continues to provide outreach, advocacy, and education, advancing knowledge and putting that knowledge into action every day for people with aphasia, their families, and the broader community.