For more information about Rett Syndrome, check out these trusted sites.
Rett Syndrome Research Trust
RSRT was launched in 2008 to drive research toward a cure for Rett Syndrome and related MECP2 disorders.
RettSyndrome.org (International Rett Syndrome Foundation)
Its goal is to accelerate full spectrum research to cure Rett syndrome and empower families with information, knowledge and connectivity.
Our Articles and Engagements
Our Hidden Stories
Read and listen to (Leslie does the audio!) Leslie's account of finding out Brooke's diagnosis.
Mile Markers: A Rett Syndrome Diagnosis Story: https://ourhiddenstories.com/2020/12/03/mile-markers-a-rett-syndrome-diagnosis-story/
Leslie is Brooke’s mom. Brooke was born in 2015 and diagnosed with Rett Syndrome in 2017. Why "pRETTy Brooke?" As other moms pointed out to Leslie, Rett is at the center of the word “pretty.” Rett Syndrome is a rare neurological disorder that primarily affects girls and women and even fewer males. It rendered Brooke incapable of walking, talking or having purposeful use of her hands. As with many affected by Rett Syndrome, Brooke developed typically and it was only later that Leslie and Tarun (Brooke's dad and Leslie's husband), realized that there were developmental delays. Leslie researched Rett Syndrome, genetic therapies, equipment, and a multitude of other aspects of the disability community. pRETTy Brooke stems from this research and we hope to push it farther. Brooke passed away from Rett Syndrome complications on March 25, 2021. As of July 2021, Leslie is a board member of the International Rett Syndrome Foundation. The work continues. Please join us on this grief and advocacy journey.
Remarks about Brooke
The pRETTy Brooke mission is to educate, enlighten, and inspire through interviews of political and other thought leaders about disability issues and to seek change through legislation.
We hope that the information we share serves as inspiration and a call-to-action for advocacy.
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