Turner Syndrome Foundation Annual Report

Another amazing year for the Turner Syndrome Foundation (TSF) is coming to an end. The best way to reflect on all of our hard work is through the Annual Report. This post will discuss the purpose of an annual report, some of the key initiatives that TSF focuses on to support the Turner Syndrome (TS) community, and what to look out for in the 2021 Annual Report.

“Kindness is the golden chain by which society is bound together.”

Johann Wolfgang von Goethe (poet, playwright, scientist, artist)

About Annual Reports

According to Merriam Webster, an annual report is a “lengthy report issued yearly by an organization, giving an account of its internal workings, and especially its finances.”

An annual report is a plan that reviews the successes an organization has accomplished during a respective year. The report provides detailed information on new projects and initiatives and their impact. Annual reports also break down in detail the year’s finances and expenditures.

About the TSF Annual Report

TSF is a volunteer-run, non-profit organization. The organization uses 100% of proceeds and donations for its mission of supporting research initiatives, facilitating educational programs, and increasing awareness among medical professionals. This opens the door to providing better medical care through early pediatric diagnosis and management of symptoms from childhood through adulthood.

The support from donors, contributors, and medical professionals has greatly increased since the founding of TSF in 2009. The work we do as an organization has been called “life-changing and caring,” and every year, our goal is to continue to work diligently to help the TS community. We also focus on introducing new initiatives to support our mission. In anticipation of the upcoming 2021 Annual Report, let’s review some of the achievements and accomplishments from the TSF 2020 Annual Report.

Achievements from the 2020 Annual Report

Last year was one of TSF’s most challenging years, due to COVID-19 restrictions and in-person event cancelations. Nevertheless, we proved that together, we could rise in the face of adversity. With generous support from donors, TSF stood strong and was able to launch novel online programs. One such program is the 24/7 Caregivers Program, a safe space for caretakers of TS patients to express themselves and ask questions.

Pivotal programs like Star Sisters and the We Learn Webinars experienced tremendous growth in 2020. Virtual meetups helped spread awareness, maintain relationships, and develop new friendships online. Additionally, the COVID-19 Impact Study, in collaboration with the National Institute of Health (NIH), examinedCOVID-19’s impact on the TS community. In addition to the newer programs, TSF was able to continue research and work collaboratively with the Council on Cardiology to spread TS awareness to medical professionals.

About the 2021 Annual Report

The Annual Report for 2021 has not yet been released, but here are some highlights to look forward to:

TSF created a website exclusively for medical professionals at TurnerSyndromeFoundation.us.
The Council on Cardiology produced ‘Strategies for Improving the Management of Cardiovascular Issues Seen in Turner Syndrome.’
TSF released the new booklet, ‘Prenatal Testing & Information About Turner Syndrome’ for expectant families. This resource is proving to be an invaluable tool for genetics departments at university hospitals.
Researchers explored new and continued topics in TS research.
TSF presented several educational webinars.
TSF hosted virtual web-conferences for professionals to discuss topics ranging from mental health to peer support.

How To Help: Action Steps

There has been a plethora of growth throughout the years since the creation of TSF. Each year, TSF creates new initiatives to increase TS awareness.

With the involvement of more medical professionals, awareness of TS has greatly improved the care of TS patients across the globe. Although there has been tremendous growth thus far, there is still a lot that needs to be done. Below are some ways you can support TSF and the TS community:

Volunteer fundraising is a great opportunity to spread awareness and collaborate with others in your community. Regardless of your level of experience, TSF can help you create a tailor-made event, like a bake sale or dance-a-thon.
Donations go a long way, since every cent received goes towards TSF’s mission of advocacy, awareness, and supporting research initiatives. All donations are greatly appreciated, and you can find out more about the various other ways to give here. If you would like to multiply your donation, please consider becoming a monthly or annual giver. TSF also accepts in-kind donations.

Takeaways

Early TS diagnosis is important! It allows for timely implementation of hormone therapies and other necessary medical interventions. Unfortunately, many late diagnoses still occur.
Researchers recommend that all female patients with idiopathic short stature (ISS) be tested for TS, but that is often not the reality. The 38% of TS patients in a recent study who were not tested for TS is a striking example of this. The researchers’ algorithm provides an easily implementable and seemingly successful option to provide physicians with electronic health record (EHR) alerts when a patient might need genetic testing. This could lead to more timely diagnoses.
If you want to help increase early diagnoses of patients with TS, please support TSF by advocating and educating others on TS.

Written by Chioma Gabriel, TSF volunteer blog writer. Edited by Laura Fasciano, TSF Founder; Prabhat Sharma, TSF volunteer blog editor; and Susan Herman, TSF volunteer lead blog editor.