Turner Syndrome Foundation
As a TS patient, I’ve been longing for a community and resources to access the information and community I’ve been craving. TSF has given that to me 10-fold as I began joining their online forums, volunteer on their Awareness Committee and see the wonderful resources they are connecting their followers to.
Sara, woman with TS
This year has been one for the history books for so many reasons. Let’s take a look at what is in our history book for 2020 (otherwise called our “Annual Report”), to see what TSF has accomplished this year. We’ll also give a sneak-peek at what is to come in 2021!
New Programs
Below you can learn about just some of the new programs we implemented in 2021.
24/7 Caregivers
24/7 Caregivers is an online support group for caregivers of individuals with TS who require 24/7, lifelong care. This group offers a safe space for caregivers to express themselves, ask questions, and seek support as they navigate providing care to a child with unique needs.
Insurance & Reimbursement with Pfizer
In collaboration with Pfizer, TSF organized a patient-oriented program about insurance and navigating the reimbursement journey. This was especially geared towards those who lack adequate insurance to access the treatment. The webinar aimed to inform caregivers about the financial supports available to them and how to navigate insurance challenges. You can view the webinar recording freely, online.
“WE Learn”
Our webinar program has taken off in 2020, becoming a cornerstone program which we have titled “WE Learn.” Individuals seeking information about various aspects of life with Turner Syndrome rely on this virtual platform to learn and ask questions. The Foundation recorded a 300% increase in participants from 2019 to 2020. All webinar recordings are available to view on-demand on our website.
Our Reach
TSF serves all members of the TS community. This includes patients, caregivers, and other family members and supporters. We also collaborate with and provide resources to the healthcare community. In 2020 we connected with:
- 3,500+ Patients
- 8,500+ Family Members
- 6,000+ Medical Professionals
- 4,000+ Supporters
Some of our top activities included:
- 11,000+ monthly website visitors
- 1,500+ registry members
- 300+ webinar participants
- 100+ TSRx participants
Research
My daughter was diagnosed with Turner Syndrome in utero, and we have been exposed to a lot of misinformation about this genetic disorder from our first genetic counseling session, and from various providers who don’t know enough about TS to provide really good guidance when dealing with their medical care and individual situations. The Turner Syndrome Foundation has been a tremendous support system for not only my daughter, but for parents of Turner girls.
Susan, parent of a woman with TS
A main pillar of our mission is research, which includes internally organized projects as well as external collaborations. Learn about some of the main research initiatives TSF was involved with this year.
Council on Cardiology
The Council on Cardiology is an initiative dedicated to improving cardiac care outcomes that can save lives. It is formed of representatives from the professional, medical, scientific, and educational communities. The COC addresses key challenges in the field by using knowledge gained from current research findings to create and distribute an educational module that will benefit cardiologists nationwide.
COVID Impact Study with the NIH
COVID-19 had a profound impact on all communities worldwide, but the extent of the impact on individuals with rare diseases was unknown. TSF was proud to partner with researchers at the National Institutes of Health to engage Turner Syndrome patients and caregivers in participating in a study to assess the impact of COVID on our community.
TSRX
The TSRx pin, in collaboration with Invitae, collects data from individuals diagnosed with Turner Syndrome to make accessible to researchers worldwide.
TS Strong in 2021
After all of this, there is still so much more that we have yet to accomplish! Our mantra going into the new year is “Turner Syndrome Strong in 2021.” Keep looking out for a future blog post that will outline some of our goals for the new year, but we will need your help to accomplish them! We hope you will consider contributing in a way that is meaningful to you, such as volunteering, donating, or fundraising.
You can learn more about TSF’s activities in 2021 in our Annual Report.
Had no idea Turner Syndrome could also cause heart defects. My niece has TS and I am trying to learn as much as I can. Amazing work you are doing, thank you!