Who We Are
Turner Syndrome Global Alliance (TSGA) was incorporated in May 2014 and granted its 501c3 nonprofit status in September 2014. We are further classified as a 509(a)(2) Public Charity and all donations made to TSGA are tax-deductible to the full extent of the law. We are based out of Overland Park, Kansas and are seeking to have a global impact through our work.
TSGA was founded by parents of girls and young women with Turner syndrome.(TS) We aim to have a direct impact on the lives of girls, women, and families living with TS by working to include TS in the national conversation on genetic research. We are the voice for a patient and parent perspective as we seek collaboration with scientists, researchers, and doctors to ensure that TS research and resources have meaningful outcomes.
Denise Culin – Founder/Executive Director of TSGA
Denise’s daughter was diagnosed in 1997 with Turner syndrome, and since then Denise has had a passion for increasing awareness and education about TS . Based in North Carolina, Denise was President of the North Carolina Chapter of the Turner Syndrome Society (TSS) from 2005-2014. She was the driving force behind a TS continuing education program for nurses, along with other educational and awareness programs for NC and the southeast. Denise also served as the national Conference Planner for TSS for 7 years. She is excited to take her passion for educating the medical community and connecting with families beyond North Carolina through the mission of the TSGA. Contact Denise directly at firstname.lastname@example.org
Kelly Ranallo – Founder/President of TSGA
Kelly has a teenage daughter who was diagnosed with Turner syndrome in 2008 and was immediately discouraged by the lack of answers and resources available in her community. She joined the Kansas City Chapter of the Turner Syndrome Society and served as President from 2009-2013. Kelly also joined the (board) at Children’s Mercy Hospital and set about building a Turner Syndrome Clinic from within the hospital. The Great HeighTS Clinic opened in 2010(?) and has since become a national model for providing comprehensive services –including support and education–to girls and families living with TS. Kelly’s passion is to learn more about TS through research to ensure that girls and women with TS have the information, tools, and support they need to live to their fullest potential. Contact Kelly directly at email@example.com
Marybel Good – Founder/Development Director of TSGA
Marybel’s teenage daughter was diagnosed with TS at birth and had a coarctation of the aorta repaired at two days old. Based in Colorado, Marybel was leader of the Colorado Support Group and then President of the Colorado Chapter of the Turner Syndrome Society (TSS) from 2010-2014. In 2012, she initiated the process of developing a TS Clinic at Children’s Hospital Colorado and this Clinic is scheduled to open in 2015. Marybel’s passion is to ensure resources, services, and opportunities so that no girl, woman, or family member ever feels isolated by a diagnosis of TS. With a M.A. degree in Nonprofit Management and prior experience working in Development for nonprofit organizations, Marybel is excited to bring more information and opportunity to the TS community through TSGA.
Angie Dunbar – Board Member
Angie Dunbar is a real estate agent with the Keller Williams Key Partners office in Prairie Village, KS. She began her real estate career after 20+ years working as an analyst and consultant for the clients that included Lee Jeans and Helzberg Diamonds. She also served as a board member for KEYS Youth Services, including as Board President from 2003-2006. Angie grew up in the small town of Lindsborg Kansas, and graduated from Kansas State University with a B.S. in Business Administration. Angie first became passionate about TS when her good friend Kelly Ranallo’s daughter was diagnosed. In her free time she enjoys family nights with her husband and two daughters.
Danny Miller, MD, PhD – Board Member
Danny Miller is a Pediatrics/Medical Genetics resident at Seattle Children’s Hospital and the University of Washington. He completed his MD at the University of Kansas and his PhD work in the laboratory of Scott Hawley at the Stowers Institute for Medical Research. His PhD research focused on using next-generation sequencing technologies to identify genetic changes that occur during meiosis in the model organism Drosophila melanogaster as well as understanding how genomic structural variation altered the repair of double strand breaks during meiosis. He has a long-standing interest in long-read sequencing and how it may be used to identify and understand genetic changes that lead to human disease. As a child of deaf parents, Danny’s interest in human genetics and rare diseases started early in life, by constantly wondering why he could hear but his parents could not.
Stephen Pool – Board Member
Originally from Independence Missouri, Stephen Pool has called Lenexa, KS home for most of his adult life. He graduated from Truman State University with a degree in Economics and Finance, and has an MBA from Avila University in International Business. Steve has worked for American Century Investments for 23 year, and is currently a portfolio manager. He is also an Adjunct Professor for the Bloch School of Business at the University of Missouri Kansas City (UMKC). In his free time, Steve volunteers at Due West Therapeutic Riding Center, assisting kids and adults with special needs. Steve is married and has 3 daughters, and his youngest daughter was diagnosed prenatally. The Pool family loves to travel, especially to Colorado where they love to spend time and hike.
What We Do
Our mission is to “connect science, resources, and funding to the Turner Syndrome community.”
The Turner Syndrome Global Alliance (TSGA) aims to have a direct impact on the lives of girls, women, and families living with Turner syndrome (TS) by working to include TS in the national conversation on genetic research. TSGA will foster collaborative opportunities for data sharing, the development of evidence based standards of care, and translational research to improve the quality of life for girls and women with TS.
TSGA also supports the development of a network of clinics as an effective health care delivery system for comprehensive care for girls and women with TS and to increase the TS knowledge base of medical professionals across the country. Additionally, TSGA will provide information on the most current research, outcomes, and strategies to allow girls and women with TS to live life to their fullest potential.
TSGA – “Unlocking the world of possibilities”
Turner Syndrome Global Alliance
10708 W 129th Street, Overland Park, KS 66213