Honoring Local TS Advocate,
This was written by local butterfly, Cheryl Jost:
My mother, Jane Chassey, is currently in hospice battling pancreatic cancer. These precious days have been spent enjoying our time together as a family and listening to her final wishes. It is her desire that in lieu of any flowers, donations be made toward the publication of this book.
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 the past 5 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.
UPDATE: It is with saddened heart that we are reminded that our time on this Earth is only temporary. Please lift up the family of Jane Chassey as they celebrate Jane's entry into the hands of our Father in Heaven on August 14, 2017. Jane Chassey Obituary
Variety Show Benefit
for Turner Syndrome - "The Jukebox"
Join Us For An Evening Of Fun, Laughter And Great Entertainment!
The Queen of All Saints Variety Guild will be performing the Variety Show, The Jukebox, to help raise money for Turner Syndrome Support for St. Louis!
When: Friday, April 28, 2017 at 7:30 p.m – Doors open at 6:30 p.m.
Where: Queen of All Saints Church, 6603 Christopher Road, St. Louis, MO 63129
Cost: $25.00 for an individual ticket or $250 for a table of 10. Pick up online tickets at Will Call the evening of the performance. Mention "Turner Syndrome" for ticket purchases at the door.
**FREE** McDonald's Extra Value Meal Coupon
with each Ticket Purchase
**FREE** Admission for 2 to the 6th Annual TS Walk
with Table Purchase
Price includes admission, beer, wine,
coffee, soda and popcorn.
Feel free to bring your own snacks as well!
Kids are welcome - This is a family event!
LIMITED TIME SPECIAL:
Reserve a table for 10 before MARCH 31 and TSS-STL will provide a FREE BYOT Bar from Fuzzy's Taco for your table!!
BYOT (Build Your Own Taco) Bar Includes:
1 Side (rice, beans, potatoes, refried beans, etc)
Tortilla Chips and choice of queso, guacamole or salsa
Tortillas or Crunchy Tacos (or both!)
Shredded Cheese, Feta Cheese
Tomato, Lettuce, Cilantro, Garlic Sauce
Fuzzy's Taco Butt Burnin' Hot Sauce
Plates, Utensils, Serving Spoons
Warmers to keep the food hot during the show!
Benefit for Turner Syndrome Support for St. Louis:
Remember Beer, Wine, Soda, Coffee and Popcorn are all included in your admission!
80% of each ticket purchased goes directly to Turner Syndrome Support for St. Louis! $20 per ticket is tax deductible. $200 is deductible for a table of 10. Turner Syndrome Walk is a registered 501(c)(3) nonprofit organization.
Here's how you can help....
1) Buy a ticket to the show or get a table and invite your friends and neighbors
2) Spread the word via social media
3) Click here for a printable flyer and post it around your area. Heck, print it out and put it on your fridge so you don't forget!
For such a great turn out
at the 5th Annual TS Walk!
Because of your support and hard work raising funds, buying shirts and bracelets, recruiting for your Team, making a donation, or just coming out to show your support....we raised over $7000 for TS programs in St. Louis and surrounding areas! Give yourself a pat on the back! Thank you!
Meet Avyanna...a horse with Turner Syndrome!