Turner Syndrome Foundation (TSF) is a lean, highly committed and primarily volunteer-led organization. We believe in the power of volunteerism to drive positive change and make a difference in the lives of others, particularly in the lives of girls and women with Turner syndrome (TS) as well as their loved ones.
To all our amazing volunteers, we want to extend our heartfelt thanks for your unwavering commitment and dedication. Your willingness to give your time, skills, and energy to support our cause has truly made a profound difference.
With those hosting online fundraisers, organizing events, collaborating with local businesses, creating educational programs, spreading awareness through social media, offering support through groups like the Stars Sisters, it’s clear our volunteers have gone above and beyond to create positive change.
Your passion and enthusiasm inspire us every day, and we’re incredibly grateful for each and every one of you.
Let’s introduce the brilliant volunteers who joined TSF last year!
Keep in mind, this can be you too! Decide to take the step forward and play a part contributing to our cause by volunteering to help women with TS all around the world!
Riya Ajmera (Blog Coordinator & Health Initiatives Assistant)
With a background in Chemistry, pre-med, and Journalism, I offer a unique blend of skills, particularly in translating complex issues into accessible content for the general public. Fueled by a deep passion for healthcare, I have taken a proactive stance by shedding light on the inadequacies of our current system and actively encouraging greater awareness and education. My writing has become a catalyst for change, empowering others to advocate for their own well-being.
As TSF’s Health Initiatives Assistant in 2023, I was offered the role as the Blog Coordinator given my skills. From events, to research, to personal stories, to expanding our reach, to any resource that can help our community, my role is endless. But my greatest hope is that the work I do ultimately helps someone somehow and further cements the strength of the TS community. You are the bond that keeps the community together, so thank you for your support thus far!
(P.S.) the cute shirt I’m wearing is for sale on TSF’s store to support a family to raise awareness after they lost their daughter to TS. Get yours today to show support!
Kesha Amin (Health Initiatives Assistant)
My name is Kesha and I am a third year student at the West Virginia College of Osteopathic Medicine. I started volunteering at TSF during the summer of 2023. I was looking for an opportunity where I could not only help out the community, but also enrich my knowledge. This perfectly aligned with what I had been searching for and I have been able to contribute to TSF’s mission in raising awareness by distributing materials about Turner syndrome. So far, I have made an infographic based on the WeLearn seminar on TS and diabetes and have edited and formatted the welcome packets. I am very excited to be a part of the health initiatives team through which I can continue making a difference in the lives of those with TS and promote better health practices. As a student, I also hope to emphasize the importance of including TS in medical education so that the new generation of physicians can increase their understanding and awareness.
Emily Marie Jer-Don (Health Initiatives Resource Coordinator)
I was a scribe at a family practice called Stoney Batter Family Medicine, where I would record a patient’s examination experience, thoroughly review patients medical history and medications, and document the physician’s remarks during the appointment.
I was a medical assistant at Stoney Batter Family Medicine, I obtained the patient’s blood pressure, vitals, pulse ox, temperature, and weight prior to them seeing the physician. I would discuss with the patient any concerns they would like to touch upon during the appointment.
I was a patient care coordinator at Ivira Pharmacy that worked with heart and vascular patients. I would discuss with over 500 patients their trend in blood pressure readings to make sure they were not trending either hypo/hypertensive. Educated the patients on lifestyle modifications on top of the medications to improve their blood pressure readings. Delegated medication changes to a clinical pharmacist when a medication change was deemed necessary.
Victoria Petrucha (Digital Marketing)
I currently work full-time at a digital marketing agency doing SEO. I graduated from Rowan University in 2015 with a B.S. in Public Relations and minor in Advertising. During my time in college, I had three internships – I interned with the radio station NJ 101.5 doing events for Big Joe Henry, I interned with CBS Radio at the corporate office in New York City, and finally interned with the Philadelphia Flyers doing PR. After needing a job after college, I had a connection with someone who worked at a digital marketing agency in Point Pleasant and that is what led me to SEO. I have been doing SEO for six years now. I currently have a home in Brick NJ, and live with my dog and am an aunt to five beautiful nieces and nephews. Reason to volunteer is to feel a part of Turner Syndrome Foundation and to make a difference.
Taïphane Orange (Advocacy Program Coordinator)
The Advocacy Program Coordinator’s role is to assist with the planning and implementation of strategy in support of the Advocacy Working Group under the direction of the ED and the program lead, Helen Rhoads.
Taïphane (tai~fan) Orange is a recent graduate at Monmouth University, majoring in Political Science with a concentration in International Relations and a minor in Spanish. Taïphane is a member of various clubs, including Model UN, Debate Hawks, and SAGE Student Advocating for Girls Education. In 2021 Taïphane received NJBIA Rising Star Awards, and in 2022 she was Student Graduate Trustee for Brookdale Community College, and has shared that she wants to contribute to the organization with her research and analytical skills. “Giving back to the community has always been a passion of mine, to inspire girls from all backgrounds to dare to dream big.”
Nakiyah A. Whitaker (Social Media and Communication Assistant)
Nakiyah is a recent graduate of a degree in Business Administration with a concentration in Small Business Management and Entrepreneurship. She is a New Jersey native and student of Monmouth University who plans to follow her dreams in pursuit of a career in marketing. During her years in college, she interned for various industries but feels exceedingly excited to apply her experience and talents here at the Turner Syndrome Foundation as a marketing program assistant and social media influencer to help raise awareness. She feels that this opportunity will provide her with an excellent opportunity and experience to yield the greatest momentum to impact TS by furthering awareness of the organization’s cause through social media engagement. Nakiyah is excited to create dynamic relationships with people who are dedicated, like she is herself, to helping others. Being a force for change is her way forward!
Milestone Recap
Thanks to our volunteers’ hard work and dedication, we have been able to reach new milestones and achieve goals that once seemed out of reach over the years.
We have managed to organize a mission that is truly remarkable, as are the people we serve. There are four tenants to the mission: Awareness | Advocacy | Education | Research. And we have made great strides within each of these tenants.
Some of these strides include:
- CME continuing medical education for physicians
- Council on Infertility
- Council on Cardiology
- Legislative advocacy
- Prenatal Testing and Understanding Turner Syndrome
- More recent resource for expectant parents.
- WE Learn webinar series
- Curated topics for the TS community. They are recorded and offered freely and viewable on demand.
View the timeline on the mission page to see our progress over the last 14 years!
And it doesn’t end here… Will you be a part of our journey this year?
Written by Andrea Pardo Salvador, TSF volunteer blog writer. Edited and Designed by Riya Ajmera. Cover graphic by Kesha Amin.
© Turner Syndrome Foundation, 2024
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