We connect individuals and families in the Turner syndrome community and create and support local resources, including a Turner syndrome clinic program.
Turner Syndrome Colorado's mission is to connect individuals and families in the Turner syndrome community and create and support local resources, including a Turner syndrome clinic program.
In 2010, a few families gathered at a park to meet and share our stories about living with Turner syndrome. At this meeting, there was an adult woman who was in her 40’s who had never met another person with TS in her entire lifetime. There were also families with young daughters meeting for the very first time. It is because of the value of these connections, that the local family group was started.
In the late 1990’s and early 2000’s there was an active Support Group Chapter in Colorado. However, when the families leading the group were no longer able to do so, the group ceased to exist – until the picnic in the park in 2010.
Originally founded as a Support Group—and later as a Chapter--under the Turner Syndrome Society of the United States (TSSUS), Turner Syndrome Colorado became an independent nonprofit organization in 2016. The Colorado community has shown incredible vision and support in building resources in Colorado with its support of the eXtraordinarY Kids Turner Syndrome Clinic. By becoming an independent organization, Turner Syndrome Colorado preserves the ability to continue to build programs and resources that will impact local families.
making an Impact
At the beginning of 2016, before Turner Syndrome Colorado was created as an independent organization, the local group made a $5,000 donation to Turner Syndrome Society of the United States to sponsor the 2016 Turner Resource Network Clinical Guidelines Consensus Meeting.
In July 2016, over 60 medical professionals and TS experts from the United States and Europe will meet in Cincinnati, OH to revise and update the Clinical Practice Guidelines, which is the standard of care document for all girls and women with TS. The current version of these guidelines was developed in 2006. The updated information will be revised based on research and data collected in the past ten years and will provide doctors and patients with a better road map for care.
Colorado families should take pride in sponsoring this important meeting.
Turner Syndrome Colorado is recently established and does not currently have a financial history. However, the Colorado family group has raised over $127,000 in the since 2012. The chart below shows how these funds were raised and distributed.
Turner Syndrome Colorado expects to hold a small fundraising campaign in the fall of 2016 and a large fundraising walk in the fall of 2017. Funds raised will be used to support local programs and resources, including the Clinic. In the future, it is possible that the Board of Directors will choose to use some funds raised to support national initiatives that will benefit families in Colorado.
Marybel’s daughter was diagnosed at birth in 2000 with 45XO Turner syndrome and had a coarctation of the aorta repaired at two days old. Marybel was leader of the Colorado Support Group and then President of the Colorado Chapter under the structure of the Turner Syndrome Society of the United States from 2010-2014. In 2012, she initiated the process of developing a TS Clinic at Children’s Hospital Colorado, provided a vision to families to fundraise for a Clinic, and worked with providers developing the Clinic program. In 2015, Marybel co-founded Turner Syndrome Global Alliance (TSGA), a national nonprofit organization working to increase research and resources on TS.
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 continue to improve care and support in Colorado.
Erica is a Nutrition Therapist and lives with her husband, Sean, and daughter, Kaiya, in Evergreen, Colorado. Kaiya was diagnosed with Mosaic Turner Syndrome prior to her birth in 2010. The family spent the first 3 years of Kaiya's life going from specialist to specialist, trying to find the best care for her. A stroke of luck lead them to the local Turner Syndrome community and they have been involved ever since. Through the local community they were introduced to the Turner Syndrome Clinic at Children's Hospital in Denver. This clinic and the local TS community showed Erica and her family that the support that is needed is readily available. They are thankful for the guidance offered by the local community!
Erica worked for Factual Data for 10 years in management prior to switching gears in her career and returning to school to pursue her passion for nutrition and helping others live a healthier life. Through nutrition, she is committed to helping girls with Turner Syndrome overcome health issues that can be managed through proper nutrition and lifestyle.
Shailendra Singh, MD
Shailendra is a Physician with the University of Colorado Health at Memorial Hospital in Colorado Springs, Colorado. His specialty is Internal Medicine. He lives in Aurora, Colorado with his wife, Benu, and their daughter, Isani. His son, Utkarsh, is attending University of Colorado in Boulder for his undergraduate studies. Shailendra went to medical school in India and moved to the United States in 1998. He finished his Internal Medicine Residency in 2001 and has been residing in Aurora with his family for the last 10 years.
Shailendra’s daughter, Isani, has been involved with research on Turner Syndrome. There is much to be known about this rare chromosomal abnormality and its treatment. The TS clinic at Children’s Hospital is a great asset for Colorado families and can be great resource for future research.
As a physician, Shailendra has mostly worked as a hospitalist who treats the patients admitted in the hospital. While standing mostly on provider’s side as a medical professional, Shailendra has experienced the pain and suffering of the individuals on the patient’s side and it has been a humbling experience for him. He is committed to volunteer his time and knowledge towards improving the care of girls and women touched by TS.
Biography coming soon.
Biography coming soon.