Turner Syndrome Foundation
Well, Turner Syndrome Awareness Month (TSAM) 2023 is a wrap, and what a wonderful month it was! Throughout February, the TS community–patients, families, advocates, and medical professionals–came together to raise awareness for this rare condition. The Turner Syndrome Foundation (TSF) sponsored a wide variety of activities and challenges for ”awareness ambassadors” to participate in, like engaging on social media, advocating with legislators, promoting TSAM in the media, and participating in fundraising events.
This year’s TSAM theme was “the X Factor.” The X represents the partial or missing X chromosome in TS patients, but also the special attributes that make each butterfly special. Let’s take a look at what we accomplished as a community during TSAM 2023!
Turner Syndrome Awareness Month 2023
Wow! February was a busy and productive month for us! A group of dedicated TSF staff and Awareness Working Group volunteers worked tirelessly to plan and execute several awareness events, fundraisers, and activities. We could not have accomplished everything we did without our wonderful Awareness Committee! TSF is committed to continuing this momentum during 2024 and beyond. And we need your support. Together we are TS strong!
Before we get back to work, let’s take a breath and look at all we accomplished last month to raise TS awareness.
Outreach & Engagement
To get people ready for TSAM, TSF offers an Awareness Toolkit, which is a collection of ready-to-use social media posts, flyers, posters, and information to spread TS awareness. This toolkit can be used all year long, not just during TSAM!
TSF engaged with hundreds of new “awareness ambassadors” during February through website contacts, blog posts, weekly and daily challenges, the Petition for Patient Care, the patient registry, email and text messages, and fundraisers. We look forward to working with you throughout the year to promote TS awareness!
Daily & Weekly Challenges
During February, TSF held daily and weekly challenges to encourage people to take action and create change. Some of these challenges included recording a short video about our individual X factors and the Take a Step for TS fundraiser (see below).
A random winner who completed each challenge was selected to win a special prize. Thirty-two winners in total received prizes! These challenges served to educate people, share stories, and encourage action.
One of our favorite challenges was Four Paws & Furry Friends for TS Awareness. Just look at these adorable pets wearing their TSAM gear from our shop!
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"Most people are familiar with Down syndrome and cystic fibrosis but have never heard of Turner syndrome ... I am surprised about the lack of awareness ... I would like to [spark] more awareness that the condition even exists, as well as help get undiagnosed young girls diagnosed."
Fundraising
Fundraising is critical for a small nonprofit like TSF. Check out some of the exciting ways we raised money for our mission during TSAM 2023!
Card Heroes Greeting Card Auction
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Our third annual Card Heroes Greeting Card Auction was organized by our wonderful volunteer and Board Trustee Lori Kobular. Greeting card designers from all over the world–the U.S., Italy, India, New Zealand, Australia, England, and Scotland–donate beautiful greeting cards. Supporters then bid on the cards to raise funds for TSF. This year, a total of 71 designers donated 630 cards, and about $4,500 was raised!
Some of the most meaningful support, however, comes in the form of the kind words from our dedicated card designers. Card designer Meg Breiter said of the card auction, “I have met a great number of wonderful people through cardmaking, and Lori Kobular is one of the most special.” Designer Roberta Sadler shared, “Having a rare medical condition myself and knowing how hard it is to raise funds for research and awareness, I wanted to help. It has brought me so much joy to make cards for a great cause that touches my heart.”
It is wonderful to see the tremendous impact the card auction has had over the years. Thank you to everyone who participated by donating cards or bidding, and a special shout out to Lori for organizing this huge event!
LSU Women's Basketball & Gordon McKernan Injury Attorneys
TSF is so proud of our partnership with the Louisiana State University women’s basketball team and Gordon McKernan Injury Attorneys in Baton Rouge. Head coach Kim Mulkey tragically lost her granddaughter Scout Marie to TS before getting the chance to meet her. She is now a staunch advocate for TS awareness.
On February 2nd, LSU women’s basketball hosted a TS awareness night. Members of the TS community, including Scout’s mom and her family, were honored during halftime.
Mr. McKernan partnered with the team and star players Alexis Morris and Angel Reese and donated a very generous $10,000 to TSF! We are so grateful for this wonderful partnership and support! Look for more details about this partnership an upcoming blog post.
Take a Step for TS
Our ongoing fundraiser Take a Step for TS is one in which awareness ambassadors ask their friends and family to support their journey as they walk (or run) the trail to TS awareness. This year’s amazing fundraisers were:
- Lindsey/Emerson Comstock – $2,599.56 raised!
- Kayla Ganger – $451.24
- Jennifer Boerger – $154.05
- Jean-Marie Andrews – $41.40
Anyone can set up a fundraising page to organize a team to run or walk. See more information about this wonderful fundraiser on TSF’s donation page.
Personal Fundraisers
Our supporters also created personal fundraisers, both online and in person. Several people created Facebook fundraisers for TSF in February, which raised over $4,000!
Also, through a partnership with her elementary school, Lillian (Lilly) Lemire, a 10-year-old girl with TS, was able to raise another $300! Through Lilly’s efforts, her school held a TS awareness day, and she educated her classmates about the condition. To show their support, they all wore purple that day.
Lilly is a shining example of the future of TS awareness and advocacy, and we are so proud of her!
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"... Creating awareness will help increase knowledge about this condition and ... help ... those with it and affected by it. Early diagnosis can lead to prevention of other medical issues and catching [them] when they are treatable."
Expanding Our Presence
Social media is a great way to reach a wide audience and let them know about TS and the needs of the TS community. See how we expanded our presence during TSAM 2023!
Social Media
We at TSF bolstered our online presence during TSAM, with initiatives and meetings across Facebook, TikTok, and Instagram. Across all of our social media platforms, we posted educational information and strived to increase awareness and engagement online. Many people shared our posts on their own social media accounts, increasing both knowledge and awareness of TS.
One very meaningful activity was the Light a Candle for TS group video. For this activity, awareness ambassadors were given candles to light and presented a short statement about who or what they were passing the candle for. For example, “I am lighting my candle for those who are raising awareness for TS.” Watch the finished video on our Facebook page.
Thanks to all of you, TSF gained 205 new TikTok followers and 85 new Facebook followers during February. Every new follower and post means so much to us and the TS community. Keep spreading the word on your social media accounts!
TS Facts of the Day
Every day, TSF published a TS fact of the day on our Facebook page. We encourage constant learning about TS and sharing with others. To revisit all of the facts of the day, visit TSF’s Facebook page.
Scroll to see some of our facts of the day.
Facebook Chats
Another great event was our Facebook live and weekly chats, during which we had about 30 participants each time. Supporters got to share experiences, ask questions, and learn more about TS. Thank you to everyone who participated and helped us raise awareness in that way! You can still check out these chats on our Facebook page, which has nearly 5,000 views!
Personalized Profile Photo Frames
Something we are very proud of is our social media frames for Instagram and Facebook. These are pre-made digital frames in which TSF inserted awareness ambassadors’ own photos to spread the word and increase visibility on social media.
Press
What better way to raise TS awareness than through our local press, which reaches thousands of people in our communities? During TSAM, we had several volunteers who were featured in their local press.
Carleigh Beck - Quinnipiac Chronicle & CHoP Linkedin
TSF volunteer Carleigh Beck, a journalism and media studies major at Quinnipiac University in Connecticut, published an article about TS in the Quinnipiac Chronicle. Carleigh has reported that she’s seen the impact of this article on campus, with staff and other students asking more questions about TS and gaining knowledge about the condition. She was also recognized for all of her achievements in a Linkedin post by the Children’s Hospital of Philadelphia (CHoP), where she was a patient.
We are so proud of Carleigh and love to see butterflies like her spreading their wings and shining their light!
Nicole Topp - Warwick, RI Beacon
Nicole Topp, another amazing TSF volunteer, shared her story in an interview by the Warwick, RI Beacon! Congratulations on your feature, Nicole! There will be more about Nicole’s amazing TSAM achievements later in this post!
Lori & Julie Kobular - Toms River, NJ Patch
Last but certainly not least, Lori Kobular and her daughter Julie were featured in an article by the Toms River, New Jersey Patch. Lori, thank you for all you do for the TS community! You are an inspiration and a fierce advocate for your daughter and others with TS.
Legislative Advocacy
Communicating with national lawmakers is one of the most effective ways to raise awareness and influence widespread change. Several staff members and volunteers had a hand in making that happen during TSAM 2023.
Petition for Patient Care
Our Legislative Advocacy Team, headed by Catherine Melman-Kenny, has also been relentless in their efforts during TSAM. We gained 297 new signatures on the Petition for Patient Care and added a feature to send targeted messages to your state and local legislative officials when you sign the petition. Legislative advocacy is the key to making real change happen, and we look forward to continued progress!
New York State TSAM Proclamation
Another legislative advancement made during TSAM 2023 was that New York State has officially recognized February as Turner Syndrome Awareness Month!
TSF supporter Bridget Malone and others worked hard to pass this recognition by signing the Petition for Patient Care and reaching out to their state and local legislators. A tremendous thank you and congratulations to all who made this amazing feat possible!
Nebraska TSAM Proclamation
Long-time TS advocate Renee Nowacki reached out to Nebraska State Senator Jane Raybould in support of a renewed resolution to proclaim February 2023 TSAM. The Nebraska Senate passed the resolution and forwarded copies to the Nebraska Department of Health and Human Services and Nebraska’s congressional delegation. What a win!
For more information about how Renee and a group of other advocates in Nebraska worked to have TSAM recognized, see our blog post from July 2020.
Cranston, RI TSAM Proclamation
Nicole Topp also had the opportunity to have a huge advocacy impact this month when she spoke before her local city council in Cranston, RI! Due in large part to Nicole’s efforts, February was officially recognized as Turner Syndrome Awareness Month in Cranston!
Nicole courageously shared her own story with the city council, saying in her speech, “I myself have and continue to deal with many health issues associated with TS, including, bicuspid aortic valve, for which I needed two surgeries … As not many doctors were familiar enough with my condition to be comfortable treating me, it delayed me getting the medical care that I needed.”
We are so proud of Nicole and know she will continue to make change happen!
Rev. Raphael Warnock, U.S. Senator from Georgia
TSF awareness and blog volunteer Helen Rhoads contacted her U.S. senator, Rev. Raphael Warnock, regarding TS awareness. He responded with a very supportive letter, stating, in part, “I am hopeful that with continued investments in medical research, we can continue to make advancements in our health care system and improve treatment for Turner syndrome. Should legislation to raise awareness for Turner syndrome and invest in Turner syndrome research come before the Senate floor, know that I will keep your thoughts in mind.”
Great job, Helen, and we appreciate Senator Warnock’s support. Contact your state and local legislators to get them on board to move towards a national TSAM proclamation!
Let's Keep the Momentum Going!
TSAM 2023 is over, but our efforts to raise awareness will continue all year. We need YOUR support to keep the momentum going! We hope that this was an impactful TSAM for you, but it’s also important to continue our efforts throughout the year. You can continue the hard work to raise awareness by:
- downloading the Awareness Toolkit;
- creating your own TS fundraising event, like a Take a Step for TS virtual walk/run;
- signing the Petition for Patient Care;
- donating directly to TSF;
- volunteering your time and talents to TSF;
- joining the TSRX PIN registry to increase research and improve patient care; and
- sharing information with your doctors.
Let’s move forward with a unifying spirit as we keep on flying high with our butterfly wings! Together we can make change happen!
Written by Canon Pham, volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023
What an Awesome Awareness Month! So happy for all we got accomplished! The Awareness Committee is the BEST!! Thank you to each on everyone who helped get the work done!