TS Book-Jane Chassey Memorial Fund
Mom was one of the original supporters of the St. Louis Turners Syndrome Society. For almost 30 years, she raised funds, volunteered at events and worked in the Meet & Greet room at the St. Louis Turners Syndrome clinic in Cardinal Glennon Children's Hospital.
For many years, I have been working on a book which details my personal journey of living with Turner Syndrome (TS). Our goal is to raise awareness about this rare chromosomal disorder with accurate information, breaking down stereotypes, misconceptions, and bringing hope and support to newly diagnosed TS families.
For those who do not know, Turner syndrome is a chromosomal condition describing girls and women with common features caused by complete or partial absence of the second sex chromosome. TS occurs in approximately 1 of every 2,000 live female births and approximately 10% of all miscarriages. This calculates to approximately 80,000 – 100,000 girls/women in the United States. Ninety eight percent of TS babies miscarry during the first trimester or are aborted, so we are the two percent that survived!
This book will provide a wide range of medical and support resources to help guide families through the different challenges of each life stage a TS child will progress through. It will be distributed through TS clinics, physician and nursing organizations (endocrinologists, ENT's, cardiologists)
and on the Turners Syndrome website.
It is our hope that it will serve as an inspiration to parents who are scared and feel alone raising their TS daughter. My mother experienced these stresses first-hand raising me and also supporting me, with my TS daughter. She loved speaking with newly diagnosed families and providing understanding and knowledge as a parent and grandparent of two TS women.
Thank you very much for your donation and honoring my beloved mother in support of her hearts desire.
I would like to thank everyone for their support in making this dream come true. I just wish my mother was here to see the final product!
We sincerely appreciate those honoring her last wishes and donating to our go fund me page. This was something she was passionate about. Anyone that knew her knew what a giving and kind person she was. It was a lot harder for her to receive so thank you for showing your love and support to a cause she cared so deeply about.
Thank you in advance for your generosity.. Cheryl