News Updates
Read more about the latest news from Dr. Jessica Klusek and the South Carolina Family Experiences Study
We are currently searching for a full-time Research Laboratory Manager/Project Coordinator to join our collaborative research team. If you have questions or interest, please contact Dr. Jessica Klusek, PhD., CCC-SLP at KLUSEK@sc.edu. To apply, click here.
Julia Pilewicz successfully presented her research project at Discover USC on Friday, April 19th. Her research project titled, Behaviors of Individuals with FXS are Associated with their Mothers’ Mental Health looked into the relationship between child behaviors and maternal well-being. and how these relationships changed with age. We are proud of you, Julia!
We are excited to introduce Zaynab Khan, a new research specialist in our lab! Zaynab graduated in 2022 from Columbia College with a Bachelor of Science in Biology. She previously obtained a phlebotomy certification and has experience working as a medical scribe. She is interested in pursuing a career in genetic counseling.
We are excited to introduce Blythe Vickery, who is now working in our lab as a project coordinator. Blythe is an ASHA certified speech-language pathologist with three years of research experience spanning both her undergraduate and graduate tenures at the University of South Carolina. Blythe completed graduate research culminating in a master's thesis investigating factors affecting misperceptions in multi-talker babble in older adults both with and without hearing loss. Blythe is excited to expand her research base, her knowledge of Fragile X syndrome, and the individuals whom it affects while utilizing her clinical skills to further the mission of our lab!
Dr. Debra Reisinger of Cincinnati Children's Hospital in Ohio was recently awarded a grant from the National Fragile X Foundation to target increasing diversity, equity, and inclusion in the diagnosis and treatment of Fragile X syndrome (FXS). As part of her grant, she will be visiting many underserved and free health clinics within the Tri-State Ohio area and some rural parts of southeast Ohio to educate community providers about FXS diagnosis and treatment. Another goal of this project is to put together a racially and ethnically diverse family advisory committee to assist in the development of these materials.
The goal of the committee is to capture parents' and caregivers' voices regarding what they wish community providers knew about FXS and/or how their process in accessing their diagnosis/treatment could’ve been improved. This would require meeting virtually 3-4 times over the next year as a group. You do not need to live in Ohio or the surrounding states to participate. The first meeting will cover gathering input for the training materials, followed by additional meetings consisting of reviewing provider feedback to maintain or update the trainings as we progress, and then reviewing the final results from the provider surveys. The ultimate goal is to design materials the foundation can use more widespread for other community providers.
Participants are able to compensate $25 for each hour of their time in the meetings which Dr. Reisinger anticipates lasting around one hour.
If you are interested, please feel free to contact Dr. Reisinger via email (debra.reisinger@cchmc.org) or phone (513-803-4022).
We are excited to share that USC recently featured our study on their website. In the article, Dr. Klusek provides background on why our studies are important for women who are FMR1 premutation carriers and those who have children with Fragile X Syndrome.
To read the article, use this link.
We are excited to share the first edition of our lab's newsletter! In this edition, we share some new faces in the lab, what we have been up to, and some preliminary findings. Thank you again for supporting our research study!
To read our full newsletter, click this link!
Dr. Klusek, Dr. Friedman, and Veronica traveled to Washington, DC, on February 26th and 27th. At this event, participants received training and then were able to meet at Capitol Hill to advocate for legislation for Fragile X Syndrome with stakeholders and representatives.
To learn more about Fragile X Advocacy Day, check out the NFXF's Website using this link!
The National Fragile X Foundation highlighted our study, "Qualitative Study of Black and Latina Mothers," on its website.
Interested in learning more or checking out their post? Click this link!
The LivJoy Foundation, partnered with The University of South Carolina, is proud to introduce a new postdoctoral fellowship focused on research improving female outcomes with Fragile-X Syndrome.
Interested in applying? Click this link, or scan the QR code located within the attached flyer.
Toni presented her research regarding the relationship between age-related speech disfluencies and life satisfaction in mothers with the FMR1 premutation at the Junior Science and Humanities Symposium (JSHS).
The JSHS allows high school students to present their research and recognize the students for their work while encouraging them to collaborate and learn from one another. Toni worked in the lab this past summer collecting her research data and plans to return this summer to continue her work in the lab. Great job, Toni!
We want to hear from Black and Latina mothers who have a child with fragile X!
This study focuses on understanding the experiences of Black and Latina mothers of children with fragile X. In particular, we would like to know how caring for a child with fragile X syndrome has affected future life planning as well as what you would like researchers to focus on. This information will help us understand research priorities of Black and Latina mothers and how we can provide culturally appropriate support.
Who can participate?
- Biological mothers of children with fragile X syndrome
- Identify as Black or Latina
What does the study involve?
For this study, you will be interviewed either over Zoom, the phone, or What’sApp. We will ask you a series of questions about your plans for the future, how you have been taking care of your child with fragile X, and your experiences with healthcare for you and your child. The interview will be recorded and transcribed for analysis.
Is travel required?
Travel is not required. The interview will be done over Zoom, the phone, or WhatsApp. An internet connection will be required in order to sign a consent form and fill out a short survey about yourself.
What is the compensation?
You will receive $20 for completing the study.
How can I get more information?
Interested in learning more? You may also reach us at SCFamilyStudy@gmail.com, call us at (803) 576-7359, or message us on WhatsApp at (803) 904-8184.
Sending our best wishes to our former research specialist Alexandra Hickey as she begins her Clinical Child Psychology PhD program at the University of Alabama. Alexandra graduated in 2019 from the University of Maryland, where she earned her Bachelor of Science in Psychology and a minor in Neuroscience. She previously worked in the Developmental Social Cognitive Neuroscience Lab, assisting in research on social interaction in children and adolescents.
Alexandra will be working under Dr. Susan White in her research lab which studies the implementation of interventions for autistic adolescents and young adults. We will miss Alexandra, but are excited to watch her embark on this next step in her career!
Dr. Laura Friedman and Dr. Jessica Klusek published a study on vocal quality within women with the FMR1 premutation. Vocal quality is an indicator of motor function, as voice is controlled by the coordination of many muscles in the face, neck, and abdomen. Findings indicated that women with the FMR1 premutation had lower voices (lower pitch) and their voices were less clear and controlled than women without the FMR1 premutation. Analyzing vocal quality in women with the FMR1 premutation may help with earlier detection of other motor problems.
To access the full paper, click here.
We are recruiting research participants to contribute to research on aging in mothers who have children with autism spectrum disorder. No travel needed! This study can be completed remotely! The project, which is led by our postdoctoral fellow Dr. Laura Friedman, examines cognitive aging in mothers who have a child with autism, compared to mothers who have neurotypical children. The study 1 hour of online surveys, and 2 hours of activities completed on Zoom videoconferencing. Participants receive $50 for completing the study.
Who is eligible?
- Mothers aged 55-75 who have an autistic child
- Mothers aged 55-75 who have biological children without disabilities
Interested in learning more? Email us at SCFamilyStudy@gmail.com, call us at (803) 576-7359, or fill out the form and we will be in touch! https://redcap.healthsciencessc.org/redcap_v11.2.1/Design/online_designer.php?pid=4090&page=recruitment_survey
Summer intern, India Rhaney, wrapped up her internship with a research presentation at the USC Summer Research Symposium this week. India is an undergraduate at Morris College who spent 10 weeks with our team this summer through the Morris College – USC Research Mentoring Program which is funded by the Department of Education. Her research project was focused on word-finding in carriers of the FMR1 premutation, and Dr. Klusek served as her mentor. We want to congratulate and thank India for all of her hard work, and are excited to watch her succeed in the future!
We are thrilled to welcome our summer intern, Oluwatoni “Toni” Ariyo to our research team! Toni is currently a high school junior and was awarded a NIH Research Diversity Supplement award to engage in research training with our team. Research Diversity Supplement awards aim to increase the participation of promising scholars from underrepresented groups in the social science, clinical, biomedical, and behavioral fields. Toni’s long-term career goal is to contribute to the medical field as a psychiatrist. Welcome Toni, we are pleased to work with you this summer and to have the opportunity to introduce you to fragile X research!
Congratulations to Carly Moser who successfully defended her dissertation titled, "Biobehavioral Synchrony in Autism Spectrum Disorder." She will be starting a postdoctoral fellowship at Vanderbilt University Medical Center in August. Carly will be missed, but we are excited to see her embark on this next stage of her career!
Join our research team on July 21st to celebrate South Carolina Fragile X Awareness Day. This event, in celebration in Fragile X Awareness Day, helps raise awareness of fragile X and the need for increased research funding and support for individuals and families living with fragile X.
Event Details:
Friday, July 21, 2023
10:30 - 12:00
SC Statehouse Lobby
We are very excited to celebrate and spread awareness about Fragile X. The research we work on would not be possible without the support and help from the families and the community.
Our students presented at the Discover USC 2023 Showcase. This event brings the university's research community together to showcase their growth and accomplishments. We are so proud of them for doing such a wonderful job at this conference!
Lab members present research at the Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities
SC Family Experiences Study lab members, Jessica Klusek, Laura Friedman, and Carly Moser, recently attended the Gatlinburg Conference in Kansas City, Missouri, and presented research on fragile X syndrome and the FMR1 premutation. Our team was grateful to attend a fantastic series of presentations on the current state of the research on intellectual and developmental disabilities!
Our collaborator, Dr. Jane Roberts, is recruiting families with infants of 12 months of age or younger who have fragile X syndrome, have the fragile X premutation, or are typically developing. For more information, visit www.USCNDDLab.com.
Dr. Klusek was recently selected as one of 12 recipients of USC’s Breakthrough Star. This award recognizes early career faculty who demonstrate considerable contributions to their fields in terms of research and scholarly activity while at USC. Congratulations Dr. Klusek!
Link to BreakThrough Star Awardees:
https://www.sc.edu/uofsc/posts/2023/03/breakthrough-stars.php
Link to Dr. Klusek's own Breakthrough Article:
https://www.sc.edu/uofsc/posts/2023/03/breakthrough_star_jessica_klusek.php
Dr. Jessica Klusek, along with post-doctoral fellow Dr. Laura Friedman and USC@COMD faculty members, Dr. Abigail Hogan attended the International FMR1 Premutation Conference in Bay of Islands, New Zealand last week. The FMR1 premutation is a genetic variant on the FMR1 gene that is sometimes associated with cognitive, language, and social-emotional differences. Women who carry the FMR1 premutation may have children with fragile X syndrome, which is a genetic syndrome that often results in intellectual disability. Drs. Klusek, Hogan, and Friedman shared their research as part of this conference.
The Carolina Autism and Neurodevelopment (CAN) Research Center is a multi-disciplinary, collaborative center for basic, clinical, and intervention research and education in autism and neurodevelopmental disorders at the University of South Carolina.
Are you interested in learning more about research studies you may be eligible for?
Sign up here! https://redcap.healthsciencessc.org/surveys/?s=93WT3XJ4YH
Our Graduate Research Assistant Nadia Sabeh Ayon was selected as the recipient of the 2023 SCSHA Foundation Scholarship.
Nadia is a student who seeks out every opportunity to grow and, as an international student, she brings a new, unique perspective to the lab!
We are happy to share information on a parent-peer support research study for families who have a child newly-diagnosed child with autism! Waitlisted children may also qualify for a free autism evaluation through this study. This research is led by our colleague, Dr. Hock, College of Social Work. https://sc.edu/study/colleges_schools/socialwork/faculty-staff/hock_robert.php).
We are currently recruiting women who are carriers of the FMR1 premutation for several ongoing studies. The overarching goal of this research is to better understand the symptoms experience by premutation carriers as they age, and to inform the development of clinical management strategies. A flyer is included below for further reference.
Click here for more information!
We are pleased to announce funding of our newest research study here at the lab! This study will follow women who carry the FMR1 premutation and healthy control women longitudinally over a 3-year period. The objective is to determine the trajectory and predictors of age-related symptoms experienced by premutation carriers during midlife and early old age, including cognitive, motor, social, and mental health symptoms. The information gleaned from this study will inform prevention, risk factors, and treatments to support healthy aging in women who carry the FMR1 premutation and their families. This study is funded by the National Institute on Aging.
For this study we are recruiting:
Women who carry the FMR1 premutation, aged 45-78 years
Women local to Columbia, SC who do not have a family history of fragile X, aged 45-78 years
Interested in learning more? Contact us at SCFamilyStudy@gmail.com, or fill out our survey form https://redcap.link/HealthyAgingStudy !
Veronica is a Columbia, SC local, and has been at the University of South Carolina as either student or staff since 2016. She graduated from the South Carolina Honors College in 2020 with a B.S. in Experimental Psychology and English, and is currently working on her M.A. in Clinical Mental Health Counseling.
She is excited to be back at the SC Family Studies lab as a research specialist after having worked there as an undergraduate student, and loves learning from and working with our families!
Latest Posts:
Dr. Klusek, in collaboration with the Aging Brain Cohort initiative at USC, published a new study linking “low normal” FMR1 CGG repeat lengths to age related health. Finding showed a relationship between lower-than-typical numbers of FMR1 CGG repeats and poorer motor function and psychological well being in healthy older adult women. This suggests that FMR1 may be an important mediator of population health.
Click here to learn more.
We are VERY excited to introduce to everyone our first person for our new segment: RA Spotlight!
Suebin is an undergraduate student in our lab.
Q&A Segment
- 1. How long have you been in the lab?
- I've been in the lab since the summer of 2022.
- 2. What's your favorite part of being in the lab?
- My favorite part of being in the lab is getting to assist with interesting research while being surrounded by a friendly atmosphere.
- 3. What are some activities you do in your free time?
- In my free time, I enjoy listening to music, being outdoors, and spending time with family and friends.
- 4. What's your dream job?
- My dream job is to become a primary care physician in the future.
From the land of fields of corn, Jennifer has been in Indiana since 4th grade. She received her B.S. degree in Psychology from Purdue University on May 2022. Her interests align with the lab's goal to develop better family-centered support services for families of children with developmental disabilities like fragile X syndrome and autism. She is happy to join the lab and is eager to learn under Dr. Jessica Klusek!
Jennifer's Personal webpage: https://jennifersun.carrd.co/
She also just started her own twitter page this year. Follow her below!
Links to our latest posts:
Dr. Laura Friedman recently received an F32 grant from the National Institution on Aging. Her project will examine cognitive aging profiles of mothers of children with autism and will also explore caregiving-associated risk factors that may be related to atypical cognitive aging (such as stress or poor sleep quality).
Our doctoral student, Carly Moser, recently received a UofSC Support to Promote Advancement of Research and Creativity (SPARC) Graduate Research Grant that will help fund her dissertation work focused on mother-child biobehavioral synchrony in autism. If you are interested in learning more and signing up, click here!
Two of our graduate assistants, Jillian Gierman and Eve Guiney, graduated this weekend! Both earned their Master's of Science in Speech-Language Pathology. They will be missed by all of us in the lab, and we wish them the best of luck as they launch their careers as speech-language pathologists. Both have bright futures ahead!
Undergraduate students Katie Klein, Abbie Broadhead, Reet Verma, Ainsley Bradbury, and Maria Striebich represented our lab at Discover UofSC. This local conference showcases research, scholarship, leadership and creative projects by undergraduate and graduate students, postdoctoral scholars and medical scholars representing the entire UofSC System. Special congratulations to Katie, who received first place!
Congratulations Katie, Reet, Ainsley, Maria, and Abbie! We are proud of your work!
Doctoral student in our lab, Carly Moser, explored factors related to the quality of social interactions between mothers and their sons with fragile X syndrome. The quality of mother-child interaction plays a key role in child development and may be especially important for individuals with intellectual disabilities. Results indicated that the maternal pragmatic language was associated with mother-youth synchrony. Check out her publication here!
Study contributes a new description of the clinical presentation of cluttering in men with FXS
Our postdoc, Dr. Katie Bangert, recently published a study investigating the speech of young men with fragile X syndrome (FXS). Half of the participants with FXS exhibited cluttering, a fluency disorder that involves rapid, unclear and/or disorganized speech. This suggests FXS as a genetic diagnosis is highly enriched for cluttering. The study may lead to improved understanding of the potential underlying mechanisms of cluttering and eventual refinements to treatment and diagnosis. Check out the article here!
See the Arnold School of Public Health news feature of Dr. Klusek's most recent work here!
Our postdoc, Dr. Laura Friedman, recently received an ASPIRE grant from UofSC’s Office of the Vice President for Research to explore the experiences of autistic adults and their families. If you’re interested in learning more and signing up, click here!
Check out this article highlighting the internship recent college graduate Ashley Kunkle completed in our lab. We are so excited to read about how her internship inspired her to pursue a career in medicine. Best of luck in your future endeavors, Ashley!
Doctoral student, Carly Moser, was awarded the UofSC Maternal and Child Health Graduate Scholarship. With the award, she is funded to study maternal and child physiological factors related to social and developmental outcomes of children with autism. Congratulations, Carly!
For families of children with autism:
For families of children with typical development:
Study finds subtle pragmatic language features may be a risk factor that contributes to reduced health and well-being in mothers of children with FXS and ASD.
Check out Dr. Klusek’s recent publication which found that pragmatic language was associated with loneliness in mothers of children with ASD and decreased life satisfaction, depression, and poorer family relationships in mothers of children with FXS. This study informs tailored support services to meet the unique needs of families of children with ASD or FXS.
https://link.springer.com/article/10.1007/s10803-021-04980-3
South Carolina Governor Henry McMaster has declared Thursday, July 22, 2021 as Fragile X Awareness Day to raise awareness about the disorder and encourage continued research.
Interested in keeping up-to-date with research participation opportunities at the University of South Carolina? The UofSC Autism and Neurodevelopmental Disorders Center of Excellence invites families to sign up for their listserv. For more information, you can scan the QR code in their flyer or click on the interest form link here.
We are still recruiting families with children with fragile X who are interested in participating in our Adult Transitions study! If you are interested in participating, you can fill out our interest survey and we will reach out to you!
In response to COVID-19, our team has been working hard to redesign the way we do studies to maximize safety. Assessments will now be conducted virtually across two short sessions. Participants can schedule the sessions at a time that is convenient for them, and participate in research from the comfort of their own homes! We are very excited to resume our studies and continue our contributions to fragile X and autism research! Thank you for your support!
To schedule your virtual session or request additional information about our ongoing studies, contact us at scfamilystudy@gmail.com.
Dr. Jessica Klusek has been awarded $149,000 from the National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. She will use the two-year grant to examine aging language trajectories for women who are carriers of the FMR1 premutation.
Our department hosted a grand opening to celebrate our move into a beautiful new space. COMD's new home in the Close-Hipp building allows the entire department, including students, faculty, administration, and researchers to collaborate and work alongside one another in a centralized location. The move has provided our research lab with a brand new work space, waiting areas for research participants, and research testing rooms. We can’t wait to use these new facilities to make our participants feel even more at home when they come to see us!
Alyssa Campanelli’s poster presentation, Social Interaction Style and Language Ability in Males with Autism and Fragile X Syndrome, was awarded Second Place in the Psychology and Neuroscience Category at Discovery USC 2019! Alyssa is a Science for Undergraduate Research Fellowship awardee and her project focused on the categorization of autism-related social phenotypes within males with fragile X syndrome. Great job, Alyssa!
Azalfa Lateef finished off the 2019 school year with a fantastic presentation at SYNAPE (Symposium for Young Neuroscientists and Professors of the SouthEast)! She presented the findings from her Science Undergraduate Research Fellowship (SURF) project, which focused on the association between physiological regulation and inhibitory control in the broad autism phenotype. Nice work, Azalfa!
Dr. Jessica Klusek is following high school seniors with fragile X syndrome. This four-year study is featured on the University of South Carolina's website. The study is hoping to uncover how well these students transition into adulthood.
Dr. Klusek, along with Dr. Jane Roberts and other stakeholders and advocates, gathered in the South Carolina state capitol to share their individual experiences with fragile X syndrome in honor of July 22, 2018 being proclaimed Fragile X Awareness Day. This governor’s proclamation of the inaugural South Carolina Fragile X Awareness Day was an important step in raising awareness for fragile X syndrome in South Carolina!
A new fragile X study has been funded! Dr. Jessica Klusek’s lab at the University of South Carolina will take part in a multi-site study funded by the National Institutes of Health. A $3.1 million research grant has been awarded from the Eunice Kennedy Shriver National Institute of Child Health & Human Development. The study is led by Dr. Len Abbeduto of the MIND institute at University of California Davis, with sites at Vanderbilt University led by Dr. Julie Lounds Taylor and University of South Carolina led by Dr. Jessica Klusek. The focus of this longitudinal study is to understand the interaction between language and capacity for independent functioning during the transition into adulthood in individuals with fragile X syndrome. Dr. Klusek is currently recruiting individuals with fragile X syndrome who are in their final year of high school. Recruitment is nationwide, with travel expenses paid by the grant. For more information, please contact Dr. Klusek’s lab.
Lyndsay Schmitt, a graduate assistant in our lab, was chosen to be featured as a "I Am Public Health" highlight for the Arnold School of Public Health. Lyndsay is pursuing masters-level training in speech-language pathology. Congratulations on your accomplishments, Lyndsay!
Sydney Burrell was awarded a Magellan Scholars Research Grant. The title of her project is: "Mother-Child Synchrony as a Predictor of Problem Behavior and Autism-Related Deficits in Individuals with Fragile X Syndrome." In this project, she will investigate if mother-child interaction can predict social outcomes, problem behaviors, and autism symptoms at a one-year follow up. Congratulations, Sydney!
Veronica McLean, a junior at USC double majoring in Psychology and English in the South Carolina Honors College, has been recently awarded a Science Undergraduate Research Fellowship (SURF) to support her engagement in mentored research with our team. Veronica’s project will focus on story grammar and narrative abilities associated with FMR1 gene mutations. Congratulations, Veronica!
