trio 2015

Denise Culin, Kelly Ranallo, Marybel Good – TSGA Founders

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 seek to have a global impact through our work.

TSGA was founded by parents of  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.

Since 2014, TSGA has worked to develop a national network of Turner Syndrome Clinics to improve the quality of care for girls and women with TS.  This network of Clinics provides an opportunity to for clinicians to share resources and develop expertise.  Beginning in 2019, TSGA is working with key Clinics to implement an data collection project, through an existing system called REDCap, that will allow multiple institutions to collect and share data for research.   We anticipate that this project will lead to increased research and knowledge about TS that can be translated into updated care through the Clinics.

 

Kelly Ranallo – Founder/President of TSGA 

Kelly has an young adult daughter who was diagnosed with Turner syndrome in 2008.  She was immediately discouraged by the lack of answers and resources available in her community.  Kelly joined the Family Advisory 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 is also the Founder of RareKC, an organization that supports patients and families impacted by a rare disease or condition. 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 kranallo@TSGAlliance.org.

 

Marybel Good – Founder/Program Coordinator of TSGA

Marybel’s young adult 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 her local support group from 2010 to 2014, when she founded Turner Syndrome Colorado – an independent 501(c)3 organization.  In 2012, she initiated the process of developing a TS Clinic at Children’s Hospital Colorado and this Clinic began in May 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.  Contact Marybel directly at mgood@TSGAlliance.org.

 

Denise Culin – Founder/Board Member

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 founded Turner Syndrome Carolinas after serving as President of the North Carolina Chapter of the Turner Syndrome Society 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 planned national conferences for 7 years and now coordinates research symposiums for TSGA.  She brings a passion for educating the medical community and connecting with families through her work in North Carolina and with TSGA.  Beginning in 2020, Denise will primarily support TSGA through social media and as an adviser in her role as Board Member.

 

Angie Dunbar – Board Member

Angie Dunbar is a real estate advisor with eXp Realty in the Kansas City Metro area. She began her real estate career in 2010 after 20+ years working in the corporate world for organizations including Accenture (Andersen Consulting), Lee Jeans, Helzberg Diamonds and Children’s Mercy Hospital.  She is Chair of the Board of Directors for RareKC, an organization that supports patients and families impacted by a rare disease or condition, and has served on a variety of other non-profit boards.  Angie is mom to two great daughters, an avid tennis and Pickleball player and fanatical Kansas City Chiefs supporter.  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 helping patients and families impacted by Turner syndrome and other rare diseases when her good friend Kelly Ranallo’s daughter was diagnosed with TS.

 

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.  After working for American Century Investments for over 25 years, he moved to a position as Vice President, Sr. Portfolio Manager at Commerce Bank.   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.  

 

TS statistic sign

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”

logo-tsga-bottom-gradient-with-purple-tsga-1-28-2015

Contact Us

Turner Syndrome Global Alliance

10708 W 129th Street, Overland Park, KS 66213

720-628-6907

TSGA@TSGAlliance.org