Want to make a difference and help people in your community? This article will explain how you can support the Turner Syndrome (TS) community, as well as the Turner Syndrome Foundation (TSF).
All About Turner Syndrome
What Is Turner Syndrome?
TS is a genetic condition that affects 1 out of 2,000 live female births. You most likely have someone who has TS in your community and don’t even know it!
It is caused by the lack of a complete pair of XX chromosomes. This can cause a range of physiological effects such as, health complications, social challenges, developmental delays, and mental health difficulties.
Only 1 to 2% of fetuses with TS survive to birth, so those who are living with Turner Syndrome are miracles!
What Is the Turner Syndrome Foundation, and How Does It Support the TS Community?
TSF is a non-profit organization based in Hazlet, New Jersey that serves individuals with TS, and their caregivers and loved ones. We also provide resources for educators, doctors, and researchers so this cause will be advanced in all areas. Our mission includes:
- increasing the amount of awareness about TS, the challenges that it causes, and the diversity of the TS community;
- supporting research that explores ways to better diagnose, treat, and care for patients with TS;
- providing resources that help educators and medical professionals better understand TS and support their students/patients with the condition;
- providing patient-centered resources to learn about Turner Syndrome and be self-advocates, and;
- encouraging and educating members and non-members of the TS community on how to advocate for earlier diagnosis, better treatments, and governmental policies that support the TS community’s well-being.
How Can I Make a Difference and Support the TS Community?
You can make a difference and help the TS community by:
- volunteering whatever talents or skills you have to advance the cause (click here);
- fundraising for TSF by either creating an in-person fundraising event (COVID restrictions permitting) or an online fundraiser (click here);
- donating to TSF directly via a paper check with this form or online using this form here;
- shopping in TSF’s online shop for products like mugs, clothes, jewelry, and bags that help spread TS awareness;
- sharing your or your loved one’s TS story with the world by talking about you or your loved one’s story of overcoming TS’s challenges and showing your/their #tspride here;
- sharing a resource with TSF and the TS community by telling TSF about resources and medical professionals that truly care, understand, and aid TSF patients by clicking here [Please note that all personal information that you share with TSF will be confidential and will be between you and TSF. Your personal info. will only be used to provide you and/or your loved one resources that can help with TS-related health challenges and to ask questions about your recommended resource.];
- leaving TSF a positive review on GreatNonprofits explaining the help you’ve received or your positive experience volunteering with or receiving support from TSF here.
TS is a condition that affects many individuals and their loved ones in many ways. As long as people in the TS community need support, TSF will be there to lend a hand.
There are many ways to get involved with TSF’s efforts to help people affected succeed, whether it’s by volunteering, fundraising, donating, buying TSF’s products, referring resources, telling your TS story, or posting positive reviews on GreatNonprofits.
This article was written by Elizabeth Rivera, TSF blog writer for TSF’s Communications department, and edited by Susan Herman , volunteer TSF blog post editor and translator.