Turner Syndrome Foundation
Do you want to positively impact your community but don’t know how? Read the stories of several new Turner Syndrome Foundation (TSF) volunteers who are making an impact by dedicating their time and talent. In this post, you will see that TSF volunteers come from a variety of backgrounds, and there is a way for anyone to contribute!
To me, volunteering is when a person offers their time to take part in a specific cause to make a difference, but volunteering is more than just “work,” which is what most expect it to be. It’s a chance to give back to the community, an opportunity to connect with others, and a path that leads to better understanding of yourself. Volunteering is a humbling experience, especially if you volunteer for a cause you’re passionate about. It changes you as a person, but in an amazing way that will change your way of life in so many aspects.
Gaby, TSF Volunteer
Meet Kayla
Kayla is a college student at Arizona State University. She shares why she decided to volunteer with TSF, “I was looking for opportunities that would be fulfilling and would provide me with valuable workplace skills, both of which TSF had!” As a volunteer she will be assessing data for TSF emails from newsletters to calls to action and more. Using data, we will ensure that the information being sent out is reaching our community. Through the volunteer role, Kayla hopes to improve her Microsoft Excel skills and learn more about data analysis.
“Though it is a small job, the work I am doing will eventually help TSF reach more people. Hopefully, in the future, Turner Syndrome (TS) will be a condition that is familiar to everyone, not by a few select people who mostly either have it or know someone who does. Before I decided to volunteer I knew about TS, since I had studied it as a science major. As a result, I recognize that TS is a condition that needs more publicity and awareness. I hope to help TSF increase its reach in both of these areas.”
“So far, I have learned that it is a tight-knit community that truly wants to bring awareness to the condition. Most importantly, I have learned that TSF is enriching the lives of those living with TS.” As a volunteer I will wholeheartedly contribute to the mission of TSF.
Meet Gaby
Gaby is a sophomore in high school in New Jersey. “I decided to volunteer for TSF because I strongly believe in helping others and empowering women. At TSF, they advocate for both, which stuck out to me. Last year I did a project about TS in my biology class, but I have learned so much more about TS since joining TSF as a volunteer. I have learned that because TS is a rare condition, individuals affected by it can feel alone in the world. TSF is a place where that isn’t the case, where women affected by TS are supported, cared for, and loved. This is what makes volunteering at TSF so humbling.”
Gaby is working on two main projects with TSF. One is to develop fun virtual events and fundraisers to keep our community connected and engaged. “We have some very cool fundraisers coming up, so look out for them,” says Gaby. Some of her ideas include a virtual cooking class, a virtual sports challenge, and a virtual friendship bracelet-making class. She is also part of a team of creators who are making video content for our Instagram. They will work to increase the awareness of TS.
“While volunteering, I hope to grow as an individual and become more of a patient, humble person. In addition to social media and fundraising volunteer work, I would also like to communicate and advocate for TS awareness to people outside the TS community. I plan to do this by talking about what I’ve learned with my friends and family or on social media platforms like Instagram.”
Meet Reyn
Next, meet Reyn, a TSF volunteer who will be making an impact by writing and editing for the blog, specifically clinically-based posts. With a Master’s Degree in narrative medicine, he “was searching for virtual volunteer opportunities that would best fit my background and skills. I found the volunteer need at TSF and was excited to participate in its efforts to make information and resources accessible to patients, parents, and caregivers. “
“Narrative medicine is, at its core, a recognition of the fundamental role storytelling plays in clinical practice. The program draws from interdisciplinary fields such as literature, philosophy, and oral history to empower greater skills in listening and reflection—to fortify the ability to both receive and witness stories.”
“I learned about TS in a medical genetics course, which focused on genetic mechanisms and clinical presentation. However, I look forward to learning more about TS—its treatments, challenges, and the triumphs of people living with TS. There is much to be learned of such a variable condition, and I hope to be a more informed individual.”
Reyn is looking towards the future of positive change for the TS community, while also focusing on writing. “Though this isn’t correlated with my direct role at TSF, I believe that my work will help contribute to the development of individuals informed about TS. This could, perhaps, lead to a greater understanding of qualifications for participation in TS research opportunities. My role could eventually evolve into a more direct contribution to this effort, but I believe supporting education efforts works in conjunction with my academic/research goals.”
Encountering the unfamiliar always changes our views in some way or another. I know TS only from a graduate-level course that focused on identifying it and understanding the underlying genetic mechanisms that might cause it. I believe that volunteering with TSF will humanize my previous experiences learning about it in a classroom and, consequently, will forge my view of how the medical field either works for or against those living with TS.
Reyn, TSF Volunteer
Meet Dhruvi
Dhruvi is another TSF volunteer who will be making an impact by contributing her writing and editing skills to the blog. Like many other volunteers, she says, “I came across the TSF as I was looking for volunteer opportunities. Its mission of advocacy resonated well with what I was looking for. One of my interests is women’s health, which happens to be the focus of the current research project I am involved with as an undergrad. As such, I decided to volunteer for TSF. While volunteering, I’ll continue working towards my undergraduate degree.”
“I hope to learn more about TS and contribute to advocacy for people with TS. [As a blog writer], I will contribute by converting scientific information into a format that is easier to read and understand.” This writing will not only help raise awareness of TS, but will ensure that patients and caregivers have access to the information they need.
“Before I decided to volunteer for TSF, I had learned about the genetics behind TS, as well as some symptoms. Since I started volunteering, I have been happy to learn about the resources and webinars provided by TSF [for the community] and to raise awareness.”
Meet Bianca
Finally, Bianca is another of our newest volunteers. She is a high school student who will be contributing by translating several forms of media into Spanish. “I wanted to volunteer for TSF because I’m very interested in the medical field. It’s important to bring awareness to different types of conditions in a positive light, rather than through the stigmatized lens the media can have. “
Through her volunteer role, Bianca hopes “to gain perspective. As someone without TS, I have no idea what it feels like to live with it. And although that will remain true, I would like to learn how I can personally help. I would also like to educate myself on TS.”
“By translating [media], I feel that we are able to reach an entirely new community, reaching those who may not have known about this organization and extending to them the same level of resources.”
Since starting as a volunteer, Bianca “has learned that TS is much more common than I previously thought. Although various treatments are available, there is no true cure. Currently, I’m reading up on the symptoms and lifestyle to try to properly understand TS. I think it’s amazing how supportive the TS community is. Everyone is constantly willing to lend a hand, advice, or whatever is needed.”
There are many ways TSF volunteers are making an impact on the TS community. Each volunteer has the opportunity to contribute in a way that best matches their skills and interests. We have many available opportunities that fit every need:
- virtual or in our Hazlet, NJ office;
- one-time or ongoing; and
- individual or in a group.
Written with contributions by Elizabeth (Liz) Rivera, TSF intern and blog post writer.
