Turner Syndrome Foundation
It’s time to get excited for Turner Syndrome Awareness Month (TSAM) 2023! Every year in February, the Turner Syndrome Foundation (TSF) sponsors and organizes TSAM. The goal of this month is to increase awareness and help TSF reach its goals of supporting research initiatives, providing educational programs, and advocating for enhanced medical care for those affected by Turner syndrome (TS). One way TSF is able to reach its goals because of its wonderful volunteers, who help increase awareness during TSAM and all year round.
Turner Syndrome Awareness Month 2023
The theme for TSAM 2023 is “the X Factor“. TS is a genetic disorder that results in a missing or partially missing X chromosome. It occurs in 1 in 2,000 live female births. However, TS is not just about “missing” something. With the theme “X Factor,” TSF seeks to emphasize what makes each person with TS unique and special. TS affects each individual differently, but positive qualities prevalent among them are that they are very strong and have above-average verbal skills. Those are examples of the “X Factor”.
The best way to learn about all the fun and meaningful activities TSF has planned for February 2023 is to subscribe to TSF’s Awareness Month 2023 email and text list here. During the month, make sure to check out TSF’s web, Facebook, Twitter, and Instagram pages each day for the challenge of the day and other activities! If you subscribe to the email or text list, you will also receive reminders there.
TSF is planning 28 days of activities and challenges during TSAM. In the past, TSAM activities and challenges have included posting information about TS on social media, signing TSF’s Petition for Patient Care, participating in the Take a Step for TS walk/run, and a card auction to raise funds for TS research (see Lori Kobular’s profile below).
We Love Our Volunteers!
TSAM is made possible by a group of dedicated volunteers who support TSF’s mission during February and throughout the year. Below are just a few profiles of exemplary volunteers whose selfless contributions have supported the TS awareness cause in general and TSAM in particular.
John Napier
Functional Administrator
John was introduced to TSF by an charitable agency that provided pro bono upgrades to TSF’s technology. He currently resides in Germany but provides support remotely. John lends passion and knowledge about the inner workings of a nonprofit, which is helpful to the growth of TSF’s mission. John’s past suggestions include streamlining tasks and management of the organization, as well as automating many of the processes that take so much time away from staff.
Helen E. Rhoads
Blog Writer & Presenter
Helen was diagnosed with TS at age 12. She has been working in higher education for over 20 years and is currently an Academic Advisement Coordinator at Chattahoochee Technical College in Georgia. Helen has taught and presented in several different arenas. She has also written for three blogs of her own on different topics. Some of the posts on her personal blog are about TS and her diagnosis. She strives to be a good listener and provides helpful information and feedback where warranted.
Helen’s 10 years of doing theater has made it easier for her to teach and present and has given her an interest in the stories others have to tell. As a presenter, Helen offered a TSF webinar titled “College 101 for the Turner syndrome Butterfly,” As a blog writer, she recently contributed to the Day in the Life series, which explored the daily life of an adult woman with TS.
Chioma Gabriel
Blog Writer
Chioma is a second-year student at St. George’s Medical School in Grenada. She is very passionate about medicine and helping others. Chioma has a background in telecommunications, nonprofit work, and clinical research, most recently as a clinical trial associate for Merck. In her free time, she likes to play tennis and give back to her local community through volunteering. Chioma is a volunteer research blog writer for TSF and has written several articles on topics such as TSF’s annual report, confidence-building, relationships, and most recently, the importance of newborn screening.
In her recent GreatNonprofits review of TSF, Chioma says: “I volunteered in 2016 for TSF when I was in college, and my experience was so enjoyable that I decided to join TSF again, but this time as a volunteer blog writer. I work alongside many hardworking individuals who are also passionate about helping young girls and women with TS, and together they make this experience worthwhile.
“… TSF provides multiple opportunities for people to volunteer, whether it is writing an article, hosting an event in your local community, or working together to create a fundraiser. I am forever grateful for my experience and look forward to continuing my work with TSF.”
See Chioma’s full GreatNonProfits review here.
Lori Kobular
Board Trustee & Awareness Committee
Lori is a TSF Board Trustee, volunteer, and mom of adult butterfly Julie. Julie also has intellectual disabilities and is on the autism spectrum. At 16, Julie was moved to a group home, where she
continues to thrive. See more about Lori and Julie’s TS journey in her blog.
Lori is one of TSF’s key volunteers, serving on the Awareness Committee and working with the 24/7 Caregivers Group. She will be hosting the TS Awareness Card Auction again in February 2023. Lori asks her designers to help her make the TS Awareness Card Auction a huge success by making and donating a card for the auction. The card can be for any occasion and must include an envelope. You can either mail the card out to the highest bidder after Lori receives proof of their donation, or you can mail the card to her ahead of time and she will mail it out to the winner after their donation is confirmed.
The TS Card Auction will take place on Lori’s Instagram account at @mulchlady6. She will need a photo of your card by January 10th so she can start posting photos of the cards on her Instagram page. Please give some thought to donating a card or two for this fundraising event!
We Need YOU!
TSF needs more outstanding volunteers to make TSAM 2023 a success. TSF extends a big “thank you” to the Awareness Committee, a team of volunteers who have dedicated themselves to making TSAM a success. Each volunteer brings a unique set of experiences and skills that helps us plan a month full of awareness activities.
TSF looks forward to TSAM because it brings a new feeling of energy to the cause, and there are plenty of ways to get involved in raising awareness next February! There is a lot to do, and planning has already begun! Specifically, TSF encourages you to volunteer for one or more of the following subcommittees:
- Publicity & graphics for TSAM
- TSF blog: articles by volunteers posted to raise awareness and educate others about TS
- Card auction (see Lori’s Kobular’s profile above)
- Social media: spread awareness of TS and TSAM on Facebook, Instagram, TikTok, etc.
- Activities/challenges: daily challenges, facts of the day to be posted on social media, Take a Step for TS walk/run, Card Auction, etc.)
Send an email to awareness@tsfusa.org if you would like to help us make TSAM 2023 a success!
Volunteers are needed to raise TS awareness not only during TSAM, but throughout the whole year. Start by filling out a form on the TSF website here.
TSF Achieves GreatNonprofits Top-Rated Status ... Again!
In large part due to its volunteers, TSF has once again reached Top-rated Status from GreatNonprofits, a platform for community-based stories about and ratings of nonprofits. This distinction helps potential supporters differentiate between nonprofits, find ones that they trust, and encourages them to be
more confident in giving or signing up to volunteer. Making the GreatNonprofits Top-rated Status helps TSF gain visibility, trust, and recognition. It is promoted to donors on the GreatNonprofits website and the TS audience. TSF’s Top-rated Status can be used by TSF in its outreach and communications.
GreatNonprofits Top-rated Status is attained through reviews and stories submitted by people who have interacted with TSF. They are TSF’s clients, donors, and volunteers (like Chioma, above) who have experienced the impact of the work TSF does up close. This award helps validate TSF’s programs, execute its mission, and further energize others to support its cause. You can read more about the GreatNonprofits Top-rated Status here.
Written by Ray Cappo, TSF volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2022
