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 ([email protected]) or phone (513-803-4022).