Get To Know The Officers
Leader & Fundraising Committee Chair
I am the Leader and Fundraising Committee Chair of Turner Syndrome Support for St. Louis, the former Leader of the Illinois Support Group, and Founder of the Annual TS Walk held in Belleville, IL. I have 7 years of personal experience with TS and have been an RMA/ Registered Phlebotomist for 3 years. My daughter Ava was born in 2008, has had numerous medical complications, heart defects, growth hormones, thyroid problems, spinal defects, sleep apnea, texture/eating problems, delayed learning, two surgeries, ear infections, vision loss, iron deficiency, and countless other medical problems. Ava was diognosed in utero and was given a 2% chance to survive. At this time there was limited knowledge on TS, so I self educated until becoming a member of the TSSUS and eventually decided I was ready to help raise awareness and educate others on the importance of this genetic disorder. In 2012 I contacted the Governor of Illinois and got February declaired Turner Syndrome Awareness Month, and each year thereafter. (I am currently working on making it known Nationally.) After receieving the Proclamation in 2012 I got together a group of people for the 1st Annual TS Walk in celebration of Governor Patt Quinn declairing February as Turner Syndrome Awareness Month. I really enjoy volunteering and helping people through their journey. My goal is to give as much care and support as possible to everyone touched by TS.
Social Committee Chair & Website Design
My daughter was diagnosed with Turner Syndrome in utero and was born in 2008. She has a partially deleted X chromesome. After never hearing of TS before my daughter's diagnosis and learning that it is quite common - 1 in 2000 girls - I decided to advocate to bring awareness to TS. Under-diagnosis and delayed diagnosis of TS is a real problem, with the average age of diagnosis at 15 years, arriving too late for life-altering treatments, early interventions, and most importantly health screenings for a potentially fatal heart defect. My main goal of awareness is to reduce the age of a girl being diagnosed with TS from middle school age to early elementary school age. I contacted Missouri Governor Jay Nixon in 2014, asking him to endorse a Proclamation officially declaring February as "Turner Syndrome Awareness Month" in the state of Missouri. I plan on continuing this quest each and every year to continue bringing awareness to TS!
When my daughter was 5 years old, we explained Turner Syndrome to her (in kid terms). After beginning the conversation explaining to her that only GIRLS have TS and not ALL girls have it, some do and some don't.... she immediately interrupted with excitement and enthusiasm and jumped around the room shouting "So...God picked ME to have Turner Syndrome!?!" She was so thrilled she got selected by God! It was clear she embraced her diagnosis, as it was what made her who she is! A few months later, it was time to plan her 6th birthday party and she was so thirlled that the Governor declared February as TS Awareness Month...AND her birthday was in February. She claimed it was obvious that she would have a TS themed birthday party! So Disney Princess Theme got kicked to the curb! We used the Butterfly Logo from Turner Syndrome Society and planned our party with that (yes, it was a challange for me figuring out how to plan a "TS Birthday Party"!) We used the motto, "Short Happens" and had miniature food: bite sized hot dogs and hamburgers, mini-cupcakes and used horderve forks as utensils! We played pin-the-butterfly-on-the-flower and got to shoot a saline-filled growth hormone shot straight in the air to make a fountain! Everyone surprised her by showing up to the party in hot pink TSSUS T-Shirts! By the time the 4th guest arrived at the door she was cracking up saying "Enough with the TS Shirts!!" and laughing with excitement because she was thrilled that everyone was just as dedicated to TS as she was! She loved it! She chose to give all the guests a copy of Coley's Story (her favorite book!) so they could understand her Turner Syndrome. My daughter, the true advocate in our family, is my drive and inspiration to advocate for TS awareness and research!
I am a graduate of Northeast Missouri State University (now re-named Truman State University). I have been a Corporate Pilot for the past 19+ years and a Massage Therapist for the past 11+ years. Our second child, a son, was born in 2009. My husband and I recently celebrated our 13th Anniversary!
Turner Syndrome Clinic Committee Chair
I am Cheryl Jost, an adult TS woman who will be married 32 years coming up in October, 2016! We have 2 awesome adopted children (one wonderful young man and a beautiful TS young woman)..
I was diagnosed back in 1971 before the internet or website was ever available. My parents and I had nowhere to turn and felt completely alone during this time. In 1988 I heard about a TS support group in the St. Louis area. I attended my first meeting and met other individuals with TS for the very first time at age 28. Shortly after that I ended up heading the St. Louis support group and helped achieve formal chapter status with the Turner Syndrome Society of the U.S. in 199? I have been active on a national and local level ever since being on the Board of Directors for the Turner Syndrome Society of the U.S. from 2000-2002, and 2002 Chair of Turner Syndrome Society of the U.S. Annual Conference in St. Louis, Missouri. My daughter and I attend the annual conferences together almost every year to keep updated on the latest medical advances and have developed lifetime friendships with other TS women from across the world. We also have had the opportunity to speak to medical students at St. Louis University about TS.
After almost five years of determination & perseverance, I am now Committee Chair for the grand opening of the St. Louis Turner Syndrome Clinic at Cardinal Glennon Children's Medical Center in June, 2014! The clinic offers newly diagnosed and current TS families a coordination of specialty medical services all in one place. The "Meet & Greet" room at the clinic gives parents of TS children a chance to meet and share information concerning any TS issues ranging from insurance to their daughter's educational needs. This clinic is also a wealth of information and offers support to newly diagnosed families who currently have nowhere to turn. Today, we have so much more to offer families than when I was first diagnosed.
I am currently in the process of publishing a book about living with TS. The goal is to educate the public about TS with accurate information, try to break down stereotypes/misconceptions, and bring hope and support to newly diagnosed TS families. I hope to be an inspiration to other TS families & individuals so they don't feel they are alone.