Director and Founding President
Determined to make a difference in the lives of individuals with Turner Syndrome through education, research and support, I founded this organization to advocate for a randomly acquired and complex condition affecting women. Precious lives, families and communities are struggling for answers. Learn more about the Vision for Turner Syndrome.
Patient Registry Coordinator
I have the pleasure of receiving the many patient registries submitted to the Turner Syndrome Foundation from numerous adult women and caregivers of young children, as well as expectant families. Individuals submit their contact information, experiences of their journey with TS, and are asked about their questions and concerns. My role on the team is to invest in these relationships to forge an alliance of community, care and support. Engaging with clients provides the greatest insight to the unmet needs of all people affected by TS. While we do not have all of the answers, my goal is to provide the greatest care.
Blog Content Coordinator
My background in Sociology and Anthropology allow me to effectively work with our team of talented writers and editors to research, write, and edit articles that resonate with TSF’s mission, the TS community, and the general public. The blog posts help spread TS awareness, aid the TS community with overcoming their challenges, and inspire both people in and outside of the TS community to advocate for more TS awareness, research, and legal protections. The writing department is expanding, and we encourage talented writers and editors to join us here at TSF.
As a member of the Turner Syndrome community for over two years, Kierstyn has influenced change and increased awareness through social media platforms. She has now taken on a new role as Talent Coordinator. She creates and executes potential talent opportunities to help broaden knowledge on a random chromosomal disorder that affects 1 in 2000 women and girls. Her role also includes coordinating calls, interviews and events to introduce brand partnership opportunities. Her background in Public Relations has allowed her to effectively work with talent to help increase advocacy and awareness for the TS community. Her goal at TSF is to ensure that TS patients have access to better resources, educational opportunities and a healthy life. She feels confident in her ability to support and execute the TSF mission through talent opportunities.
My objective is to help make life better for all people, “To ensure we provide the best possible support in situations of crisis or hardships, many of my social work courses required interactive, mock situations; because of this I feel confident in my ability to produce efficient yet empathetic support in times of need to the Turner Syndrome Community.”
As a current student of Business Administration with a concentration in International Business at Monmouth University, I am so grateful to work with the Turner Syndrome Foundation. Through working primarily in community outreach, my goal is to continue to help those with Turner Syndrome not only have access to resources and any information that may be essential to them, but also maintain a connection with them and enable them to feel safe and heard. In my role I will continue to advocate for those who are affected by Turner Syndrome to build and maintain community support.
I am so grateful for this opportunity! I empathize a lot with those who have Turner Syndrome because I also suffer from a medical condition with no cure, epilepsy. Since I was diagnosed, the one thing I’ve done for myself and other people out there with epilepsy was advocate. Advocacy is the best way to bring light on a situation and inform people. With my new role, I will advocate for the Turner Syndrome community, educating the public on this condition and the roles they can also take to help.
Lead Editor and Writer
Susan Herman, a TSF volunteer since 2019, is the lead editor of our blog. She also produces our monthly My Story series, which highlights the wonderfully diverse journeys of people living with TS and their families and caretakers. In her professional life, Susan is an editor, linguist, and instructor for the federal government. Susan grew up in the D.C. area and lived in Tucson for 16 years as a teenager and young adult. She earned a B.A. degree in Spanish and political science and a M.A. degree in Spanish linguistics from the University of Arizona in Tucson. She currently lives in Maryland with her wonderful husband, Chris, and her their three crazy cats.
Professional Membership Program Development
I recently finished my Masters degree in Physician Assistant Studies, a career path I chose with the aim of becoming a PA in OBGYN/Women’s Health. I have worked with extremely diverse communities in various hospitals across the tri-state area. My health care background and passion for advocacy provide me the opportunity to educate people on Turner Syndrome from a unique perspective.
I am currently located in Maryland, and find myself dedicated to applying data mining and research skills to search for related data from online data sources and research papers, and compile information to support further research and information sharing. I really appreciate the chance to work here and I hope to gain some insightful outcomes which would be meaningful to people around the world.
Dr. Komal Prem
I have a very strong scientific background, with a B.S. and M.S. in engineering and an M.D., and I currently work as a clinical pharmacologist in a biotech company. I love the opportunity to provide support to young girls with Turner’s to show them that even with these medical issues, there is light at the end of the tunnel and they can live full, productive, engaging, and successful lives!
Gaby Lamdagan, Social Media and Fundraising