Turner Syndrome Foundation
The Turner Syndrome Foundation (TSF) had a very productive 2022! We expanded our programs and initiatives to support patients, caregivers, and families affected by Turner syndrome (TS). Let’s take a look at TSF’s 2022 Annual Report, which outlines the organization’s accomplishments in 2022 and our plans for continued support to the TS community in 2023. See the full 2022 TSF Annual Report on the TSF website.
Pivotal Programs in 2022
24/7 Caregivers
24/7 Caregivers is an online support group for caregivers of individuals with TS who require full-time, 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 loved one with unique needs.
Growth Hormone Program
Dream Big for GHD
In collaboration with Pfizer, TSF organized a patient-oriented webinar about growth hormone and resources for those who lack adequate insurance. Growth hormone is a mainstay of treatments for individuals with TS, and access to the treatment has lifelong benefits. Now more than ever, financial barriers limit access to this critical treatment. This webinar aimed to inform caregivers about the financial resources available to them and how to navigate insurance challenges.
Star Sisters
Star Sisters is a private, online support group for all individuals with TS. In 2020, TSF introduced virtual meetups, which provide a unique opportunity to form deeper connections. Star Sisters membership more than doubled in 2022!
WE Learn Webinars
Our WE Learn webinar program is a cornerstone program. Individuals seeking information about various aspects of life with TS rely on this virtual platform to learn and ask questions. TSF recorded a 300% increase in participants from 2019 to 2022. All webinar recordings are available to view on demand for free on our website.
TSF’s 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 2022, we connected with:
- 3,000+ patients with TS
- 8,100+ family members
- 5,900+ medical professionals
- 2,900+ donors & volunteers
Professional Initiatives
Strategies for Improving Cardiovascular Care
The Council on Cardiology (COC) is an initiative dedicated to improving cardiac care outcomes that can save lives. It consists 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.
Research
TSRX PIN
The TS Research eXchange Patient Insights Network (TSRX PIN), in collaboration with Invitae, is a global patient registry that collects data from individuals diagnosed with TS to make it accessible to researchers worldwide. In 2022, the registry expanded to include organ systems and common conditions associated with TS.
COVID-19 Impact Study
TSF was proud to partner with researchers at the National Institutes of Health to engage TS patients and caregivers in participating in a study to assess the impact of COVID on our community. The COVID-19 study has had a profound impact on all communities worldwide, but the extent of the impact on individuals with rare diseases was unknown.
Looking Forward to 2023
TSF will continue to expand its advocacy, awareness, education, and research initiatives in 2023.
TSRX PIN
- expansion of the TSRX PIN, a global patient registry for TS, and
- collaborative research initiatives with government entities & universities.
Patient & Caregiver Resources
- welcoming and supporting patients and caregivers along their TS journey and
- offering new webinars and educational resources, including a guide for expectant parents.
Advocacy
- renewing the annual Petition for Patient Care for legislative advocacy to achieve goals through federal policy and
- strengthening activism through coordinated volunteer recruitment and engagement.
Medical Provider Outreach
- providing resources to professionals, in an effort to address the challenges and opportunities of applying new knowledge from evidence-based research into practice;
- educating physicians about TS to decrease the age of diagnosis;
- developing a guide for pediatricians; and
- offering professional membership to specialized care providers.
How You Can Support the TS Community
TSF could not carry out all our initiatives and projects without our supporters, advocates, and volunteers. You can make a difference for individuals with TS by:
- donating online,
- joining our Monthly Giving Club,
- honoring a loved one with your donation,
- giving to the TS community via in lieu of gifts,
- raising TS awareness,
- advocating for the TS community, and
- volunteering for TSF.
As we look back at our 2022 Annual Report and all the great things we accomplished, TSF would like to thank our volunteers and supporters. We could not do what we do without you! We look forward to continuing to partner with all of you in 2023 to advance TS awareness and research and support the TS community. Together, we are TS strong!
Written by Valeriia Muradova, TSF volunteer blog writer, and edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2023
The Turner Syndrome Foundation is an awesome organization that helps families and the medical profession to understand this rare condition and how it affects these miracle females!!
Happy and proud to be part of this amazing organization and to collaborate with the many volunteers and supporters who make the mission hum!
The Turner Syndrome Foundation is a great organization that helps families and the medical field to understand the implications of Turner Syndrome throughout a female’s lifetime! I am very proud to be a part of this organization!