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!
Being trailblazers of Fragile X research is no small feat! Dr. Bridgette Tonnesen, Dr. Debra Reisinger, and Dr. Jane Roberts attended the National Fragile X Conference in Cincinnati, Ohio last week where they presented their research alongside the world’s leading Fragile X experts. This family-friendly forum which occurs every two years helps families affected by FXS get the support which they need. For more information, stay up to date by following the National Fragile X Foundation: https://fragilex.org/
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!
Local community leader, Robin Blackwood, headed to Washington, D.C. to share the story of her son Sam, who was diagnosed with fragile X syndrome, with legislators. Blackwood joined parents from around the nation as part of the 14th annual Speak Now for Kids Family Advocacy Day. Blackwood advocated for children’s health, particularly to safeguard care for children with special needs. Thanks for bringing awareness to such an important issue! Read more about her efforts at Greenville Online and Fox Carolina.
Hannah Thomas didn’t think she was interested in a career working with children. Now, after spending three years conducting research in two College of Arts and Sciences’ psychology department labs, the May graduate can’t imagine doing anything else but helping unravel neurological and learning issues that many children face.
The Ausome Gym‘s state-of-the-art equipment and specialized play areas gives children the opportunity to reach goals related to sensory processing, attention, movement, strength, behavior regulation, language, social interactions, safety, and self-care skills – while having fun! Exciting activities for people of all ages including ball pit, BEAM interactive game floors, super building blocks, bubble tubes, climbing structures, dome and light mirrors, swings, and much more! They even have dance classes and soccer camps, as mentioned in their youtube video.
Midlands Strides for Autism Festival is April 28, 2018 at Irmo Community Park and Upstate Strides for Autism Festival is June 9, 2018 at Heritage Park, Simpsonville, SC. The Money raised for South Carolina Autism Society stays in South Carolina and goes towards individual and family support, education, advocacy, and training. Information on how to get involved in this important event can be found on the SC Autism Society website: http://scautism.org/strides/
Emma has been a part of our study since she was only 9 months old!! We have thoroughly enjoyed watching her develop into the young lady she is today:)
We are so glad that our participants are able to enjoy a complimentary visit to EdVenture Children’s Museum during their time here in Columbia!
Debra Reisinger is a current graduate student on internship at Kennedy Krieger Institute at the John Hopkins School of Medicine in Baltimore Maryland. She is on track to graduate with her doctorate this year and has already accepted a post-doctoral position at Cincinnati’s Children’s Hospital! She will be working in Dr. Craig Erickson’s lab where they primarily examine pathophysiological mechanisms and treatment efficacy in individuals with neurodevelopmental disabilities, including ASD and FXS.
Kelly Caravella and Jordan Ezell, graduate students working under Jane Roberts in our lab, have been awarded grants sponsored by the Office of the Vice President for Research. This Support to Promote Advancement of Research and Creativity (SPARC) is given out each year in order to ignite research and creative excellence across all disciplines at USC. Kelly’s work will be Comparing Autism Symptomatology in Young Children with Fragile X Syndrome and Down Syndrome. Jordan will be studying Anxiety in Preschool Children with Autism. Congratulations to both of them for winning this prestigious award which will allow them to pursue their scholarly projects!
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