Monthly Archives: July 2018

  • -

FXS Awareness Day

Tags : 

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!

 


  • -

Superheroines of Fragile X Research!

Tags : 

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/


  • -

Governor Henry McMaster declares July 22nd Fragile X Awareness Day

Tags : 

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 has proclaimed July 22nd 2018 at Fragile X Awareness Day and 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!


  • -

Advocating for Children’s Health

Tags : 

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.


Learn how you can take part in our research