Turner Syndrome Foundation
Have you ever wondered how nonprofit organizations are able to do what they do? In this article, we will discuss how nonprofits like the Turner Syndrome Foundation (TSF) are maintained and why fundraising is so important in being able to provide the services they offer. Specifically, we will talk about TSF’s mission and how it relies on the generosity of donors, sponsors, and volunteers to make it a reality.
Why Nonprofits Need Your Support
A non-profit organization is an entity that relies on voluntary donations to meet the needs of a target community. All the funds collected by nonprofits are allocated solely towards the advancement of a collective vision. Without donations, these organizations would not be able to accomplish their goals. There are various ways in which a non-profit can obtain donations; however, fundraising is essential to this process. Fundraising projects bring a sense of unity and motivation and employ a team effort to accomplish a common goal. This brings individuals together and makes the nonprofit stronger and more successful in accomplishing its mission.
With technological advancements within the past two decades, online fundraising can be accomplished efficiently and reach more people around the world. Some of the new fundraising trends include flexible giving options, such as Paypal or Zelle, and more hybrid events, such as online webinars. Having a larger audience opens the door for partnerships, sponsorships, and other means of soliciting donations. The organization can, in turn, help more individuals within a target community.
All these factors contribute towards the long-term sustainability of a nonprofit. However, in order to ensure new initiatives are created, planned, and carried out effectively, these organizations also need volunteers. Volunteers are an invaluable resource in ensuring an organization’s vital programs remain functioning. With a strong foundation, a nonprofit like TSF can positively impact a community and bring to light issues involving research and health care.
Why Support TSF?
TSF is a nonprofit, mostly volunteer-run organization founded in 2009 by Laura Fasciano. The goal was to bring awareness to Turner Syndrome (TS), a random chromosomal disorder that affects one in every 2,000 live female births. TSF’s initiatives focus on four main program areas: awareness, advocacy, research, and education.
TSF is non-government funded and depends 100% on donations and sponsorships. The organization uses all donations to support TS research initiatives; advocate for the TS community; educate patients, caregivers, doctors, and educators; and improve awareness about the condition. The educational tools TS provides can be utilized by anyone!
TS is ideally diagnosed in utero or shortly after birth. However, there are too many cases in which symptoms associated with the condition go undetected for years, which can lead to further health complications. With the right care, TS patients can not only survive, but thrive. The services provided by TSF help make this possible. TSF provides a platform to push for scientific advancement and earlier diagnosis. The organization also provides a safe space for individuals all over the world with similar experiences to connect.
TSF Services
TSF offers a plethora of free resources through its website. One of the resources available is the We Learn webinars, which are donation-funded events presented by medical or other professionals on patient-centered topics. TSF’s website also has the Find Your Doctor feature, which allows patients, parents, or caregivers to look up a physician in their area who treats TS. There is also a growing list of specialized centers by state that provide comprehensive care to patients with TS. Addtionally, the Resources section of the TSF website contains a wealth of information about living with TS, including the Patient Handbook and 2007 Clinical Care Guidelines. While there is a charge for the Patient Handbook, most of these resources are free.
The Star Sisters Group is a private Facebook group that serves as a safe space for girls and women with TS. Caretakers also are welcome to join this group, and members are able to share their experiences and emotions freely without judgment. For caretakers dealing with more complex cases of TS, TSF also sponsors the Caretakers 24/7 Group, another support system.
TSF’s website is filled with a ton of beneficial information and can provide direction for those who may not know how to navigate a new diagnosis or ongoing management of TS. Through fundraising and volunteers, TSF is able to provide the best services to the community and continue to find new methods of supporting research initiatives in the future.
Take a Step for TS
Meet Lindsey and Emerson
During the month of February 2022–TS Awareness Month–TSF organized the Take a Step for TS challenge, a virtual run/walk to raise funds for individuals with TS. Teams created fundraising web pages where supporters could donate or sponsor participants by the mile. The winner of this challenge was Lindsey Comstock, whose baby daughter Emerson was diagnosed with TS.
Lindsey raised a total of $2,668.83 for the fundraising event, which is amazing! As a caretaker, Lindsey put her best foot forward (pun intended) and received many donations. These funds will be used to help support future TSF initiatives. In the following paragraphs, Lindsey delves deeper into her personal experiences and the motivation for her participation in the Take a Step for TS fundraising event.
Emerson’s doctors suspected she had TS while she was in the womb. They confirmed her diagnosis upon her birth. I knew nothing about TS at that time, so I did a lot of research and found TSF’s Facebook page, which was extremely helpful. I learned quickly that Emerson was one of the few girls with TS diagnosed at birth. I learned that’s not common for most babies with TS, and that early diagnosis is a huge cause that TSF is trying to advocate for. She has been monitored by a cardiologist, endocrinologist, and geneticist since birth.
Emerson began early intervention, physical therapy, and growth hormone shots at four months of age. She is now seven months old. We feel blessed that this was caught so early and that her treatment can begin. We are hopeful that, with our current knowledge, we can put things in place to set her up for the most successful life. I firmly believe that every person with TS should have that right, which early diagnosis would assure for them.
That is why I decided to fundraise for the Take a Step for TS virtual walk/run during TS Awareness Month in February. I want to see the age of diagnosis decrease, and one way I know I can help is to spread awareness. I look forward to learning more and advocating for my daughter as well as for others. We love our little butterfly. ~Written by Lindsey, Emerson’s mom
Emerson is a beautiful baby who will grow into a beautiful butterfly. She and Lindsey are an example of why we fight for a brighter future for the TS community.
How You Can Help
Now that you have a better understanding of how non-profit organizations are run, we need your help! TSF provides an array of opportunities for you to give back and support the TS community, such as:
- 1938 Giving Club: This effort is a means for individuals to make regular charitable donations by mail, the toll-free number given online, or through a secure online option. Monthly donors typically pledge amounts ranging from $50 to $100 dollars, which helps to provide a steady source of funding for educational resources, research, and more.
- In-kind donation: This is a donation of services or non-monetary goods that an individual or small business can provide, such as expertise, gift certificates, or goods.
- Real estate donation: If you would like to donate real estate and you are looking for a way to get rid of property that you may no longer need, this is a great way to give back!
- Vehicle donation: One person’s trash can be another person’s treasure. A car that is not being used is the perfect gift! TSF even schedules a free tow.
- Memorial tribute: As an alternative to financial donations, flowers for memorial services are always in demand. This gift will be acknowledged to the family; however, the amount of the gift will remain confidential.
- In-lieu gifts: This is an opportunity to give back in commemoration of an event, such as a birthday or wedding. TSF will provide a custom certificate to represent the specific day and the donation, upon request.
- Volunteer: TSF is a largely volunteer-run organization. Volunteers are always welcome to donate their time and skills!
Sources
- What is Nonprofit Fundraising?, Kindful
- 9 Reasons Why Fundraising Is Important for Your Nonprofit, fundraisingIP.com
- Five fundraising trends to capitalize on in 2022, Candid
Written by Chioma Gabriel, volunteer TSF blog writer, and Lindsey, mom of Emerson, a baby with TS. Edited by Susan Herman, TSF Blog Coordinator. Designed by Jasmine Persaud, TSF volunteer blog designer.
© Turner Syndrome Foundation, 2022
