Unlocking a world of possibilities

When Denise’s daughter was diagnosed with TS at 2.5 years old in 1997, theirs was one of the rare, fortunate families who had local access to high quality specialty care. They were referred to Dr. Marcia Davenport at the University of North Carolina, who was a pioneer in TS and one of the lead investigators in using growth hormone for individuals with TS. “Dr. Davenport was an excellent listener. We were very fortunate to have that, but in general it wasn’t always the case.”

Dr. Davenport had created a TS clinic without giving it the official title. She hand picked and trained specialists including ENT (ear, nose & throat), dermatology, cardiology, and more. She educated these specialists about Turner syndrome and collaborated with them on her patients’ care. As a result, patients in her care had their needs met by a team who truly understood TS, resulting in better overall health.

Twelve years ago, iIn Kansas City, Kelly had a vision for multidisciplinary care and set to work to develop a TS clinic. Her daughter had been diagnosed in 2006 at 8 years old, and Kelly could find no local medical resources to meet her daughter’s needs. Kelly was frustrated and discouraged by the lack of answers and resources for Turner syndrome available in her community. She joined the Family Advisory Board at Children’s Mercy Hospital and set about building a Turner Syndrome Clinic from within the hospital. 

In Colorado, Marybel had spent 10 years navigating care for her daughter who had been diagnosed with TS at birth.  Her daughter had been treated by at least 7 different specialists for health concerns common to TS – but none of these doctors talked to each other and many of them were not familiar with TS.  Those that were, did not have access to the most current research.  Having a child with TS was a very isolating experience.

By 2010, Denise, Kelly and Marybel all had attended the annual education conference hosted by the Turner Syndrome Society of the US (TSSUS) and understood the support and friendship that comes from connecting with other patients and family on the journey of living with TS.  In partnership with TSSUS, Denise and Kelly had access to support groups in North Carolina and Kansas City.  Marybel pulled together parents in Colorado and began to build a support group.

By 2012, the Great HeighTS Clinic at Children’s Mercy Hospital in Kansas City was two years old and serving approximately 30 families at each of its quarterly clinics.  The Colorado community began working with its local Children’s hospital to create a similar model of care, which opened as the eXtraOrdinary Kids Turner Syndrome Clinic in 2015.  As these clinics became known in the TS community, individuals and care providers from other regions saw the impact on patient care and interest grew in creating additional clinics.  Denise, Kelly, and Marybel recognized that the patient community longed for coordinated care, better information about TS, and research to learn more about TS. TSGA was founded in 2014 to fill a gap in resources and care, increase research on TS, and support clinic development in more communities.

Denise, Kelly, and Marybel do the work of TSGA because of their passion for their daughters and all of the other wonderful people they have met in the Turner syndrome community.  As volunteers, they have done the work of TSGA around the schedules of their families and their careers.  They are grateful for the confidence and the support of the community through donations that has allowed this work.

Since then:

Since 2014, TSGA has continued to be a resource to the community.  Our work has included:

• Sharing evidence-based information on health and learning for individuals with TS and their families through our Facebook page and website
• Gathering and sharing photos from the TS community that show the diversity and beauty of individuals living their lives with TS
• Annual community celebration and Kaleidoscope fundraising walk in Kansas City (these ended after COVID).
• Creating collaborative opportunities for doctors working with patients with TS to share best practices and work together to expand research programs
• Working with doctors to support the creation of multidisciplinary clinics across the country – today there are over 40 Turner syndrome clinics across the country.
• Developing designation criteria for TS clinics to help families identify the best care for their needs
• Initial funding and concept support for the Turner Syndrome InsighTS Registry to begin to collect clinical data on girls and women with TS so that research can be done to improve care.  In early 2026, over 16 sites have enrolled 850 participants.
• Working with the eXtraOrdinary Kids Turner Syndrome team in Colorado to submit a successful application for multi-million dollar research funding awarded in 2025.
• Participating in committees to ensure that patients and families are included in decisions regarding the direction of research for the 2025-2030 NASCARR funding.

In 2023, Denise retired from her volunteer role as a primary volunteer at TSGA to spend more time with her family, including her eight grandchildren.   Kelly and Marybel are both employed full time but keep the important work of TSGA going and are so excited to see what the future brings, especially with the influx of NASCARR funding.

There is more work to be done, and we would love your support. If you are passionate about the work we are doing, 100% of your donation will go toward advancing clinical care and research for the TS community.