In the heart of South Carolina’s capitol, Dr. Jane Roberts, Dr. Jessica Klusek, Robin Blackwood, and the Kuperman family shared their personal experiences with Fragile X syndrome in honor of the proclamation of July 22, 2018 as Fragile X Awareness Day. Thank you to everyone who came out to the State House to celebrate this declaration and to everyone who has played a role in raising awareness, advocating for policy, and fostering a welcoming community!
Although the genetic underpinnings of fragile X syndrome are known by scientists, it often goes undetected due to lack of awareness among the public and sometimes in the medical community. We are proud of South Carolina for increasing efforts to raise awareness about this condition, with the aim of helping patients with the fragile X gene make better-informed decisions and encouraging all South Carolinians to fight for early diagnosis and treatment of this disorder.
Governor Henry McMaster proclaimed July 22nd, 2018 at Fragile X Awareness Day in South Carolina. In honor of this occasion, Dr. Roberts will be speaking at the SC State House Lobby in Columbia on Monday, July 23rd at 11:00AM. Please consider coming out to the State House to commemorate this special occasion!
National Fragile X Advocacy Day took place February 28th – March 1st, 2017 in Washington D.C.! Dr. Jane Roberts was proud to be able to attend this annual event along with many other influential interventionists who are fighting for the rights of the Fragile X Community! Here, Dr. Roberts is pictured with Dejan Budimirovic M.D., medical co-director of the Fragile X Clinic at Kennedy Krieger Institute, as well as Tracy Stackhouse, and Sarah (“Mouse”) Scharfenaker, the co-founders of Developmental FX in Denver Colorado. Parents, family members and self-advocates living with Fragile X are encouraged to participate in this annual event and make their voices heard!
Alexis Ruber received a Science Undergraduate Research Fellowship (SURF) award. Alexis will examine eye contact during a social interaction among mothers of children with fragile X syndrome and mothers of children with autism. The study also aims to examine the relationship between sympathetic arousal, measured by skin conductance, and eye contact in these groups. Congratulations, Alexis!
The National Fragile X Foundation awarded Sara Matherly a $400 travel award for the 49th Annual Gatlinburg Conference in San Diego, CA. Her work was entitled: Effect of anxiety disorders on functional daily living skills in young adult males with fragile X syndrome. Congratulations Sara!
Our list of publications and presentations for 2015 has been updated based on our activities over the past year. Check out any of the links to see what we’ve been researching!
Jessi Scherr got selected to complete her doctoral internship at a top APA accredited internship site at Nationwide Children’s Hospital with an emphasis in Intellectual and Developmental Disabilities. She is looking forward to continuing her clinical training in assessment and intervention with children and families that are influenced by developmental disabilities, as well as gaining experience with clinical research.
Do you have a child with fragile X syndrome or the fragile X premutation? We are currently recruiting fragile X families in Charlotte, NC and it’s surrounding areas to participate in our research studies! We are also recruiting women who are carriers of the fragile X premutation who do not have children.
The goal of our studies is to learn about behavioral and language profiles associated with fragile X and the fragile X premutation.
Want to learn more? Contact Jessica Klusek at [email protected] or (803) 777-5676.
Learn how you can take part in our research
