On Saturday, April 7th, 2018, parents, family members, researchers, and clinicians came together at Boston Children’s Hospital (BCH) to learn about behaviors and FXS, how to help individuals with Fragile X, and about ongoing medications and drug studies. BCH is a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC).
The day started with Dr. Jonathan Picker, director of the Fragile X program at Boston Children’s Hospital, introducing the keynote speakers, Dr. Jennifer Epstein and Dr. Craig Erickson. The two general sessions were packed with parents and professionals. One session was learning about behavior and how to help individuals with Fragile X, and the medication session brought to light many drug studies and research that is going on right now. They encouraged parents to find out about these studies and participate.
In addition to general sessions, there were two break-out sessions:
Behavior and Medication
IEP and Working with Schools with Lisa Prock
Fragile X 101/Biomarkers with Carol Wilkinson
Newly Diagnosed with Sharyn Lincoln
Advocacy at All Stages and Levels with Denise and Kelley Devine
The behavior sessions were overflowing with parents and professionals and many parents were glad that this conference was offered in the area. Several topics were suggested for the next conference, so look out for that.
By all accounts, it was a success and a valuable time for all who attended – even those who were able to participate via Skype in Chile, where they would not normally be able to hear from and ask questions of world-class experts.
This event was made possible by the collaboration of many people. Several organizations, companies, and clinics provided funding including the National Fragile X Foundation as a Gold Sponsor. Denise Devine, leader of the Western Massachusetts Chapter of the NFXF and Boston Children’s Hospital Fragile X Clinic staff were the planners and organizers. A special thank you go out to Denise and Kate Pawlowski of the BCH Fragile X Clinic. Kate’s organizational skills made this possible.
This is yet another example that we are stronger when we come together to Stand Up to Fragile X, and we look forward to the next one.
The National Fragile X Foundation is committed to making FX educational opportunities available to families and treatment professionals not only locally in partnership with our chapters, and nationally with our international conferences which attract attendees from around the world. If you would like to organize an educational conference in your area, please reach out to paula@fragilex.org.
