2024 TSSUS Annual Fundraising Campaign

Because of you, we can continue to meet the needs of the TS community.

Please donate today and help us impact lives.

It is complicated to manage a litany of doctor’s appointments, daily growth hormone therapy injections, estrogen therapy and learning differences. For a school-aged child, all of these can foster a feeling of being different. For them, having just one friend with TS who “gets me” can make a world of difference. TSSUS has been serving the TS community for 37 years. Not only do we advance knowledge, facilitate research, and provide support, we provide hope and acceptance for anyone who is struggling with a TS-related need at any point in their life.

Together, we personally help 100 people learn, grow, laugh and become stronger every month.

The last few years have been difficult for everyone. Patterns of isolation lingering from social distancing and changing workplace habits have resulted in people feeling more disconnected than before. While the world seems to have more stressors than before the pandemic, people in our community often work harder to adjust and can become more anxious. Recognizing the increasing need for connection, TSSUS provides series of strictly social Zoom chats to serve people with TS of all ages. Our monthly Zoom chats are among our most popular programs to date. They offer a place for people to come together, share experiences, and build friendships. From the 20-somethings group to the Golden Butterflies, the TSSUS generational Zoom chats are fostering community. Hundreds of people in our community are coming together to support each other through our various on-line meet-ups.

TSSUS local support groups are resuming in-person get-togethers. Having a group of like-minded people to meet for dinner, a movie, or just some much-needed social time is an invaluable resource supported by TSSUS. At the TSSUS National Turner Syndrome Conference in Orlando this past Summer, more than 600 people with TS, their families, and the medical community came together in the spirit of learning and supporting each other. It was a life-changing experience for many, and the joy of being together again was clearly seen in the faces of young girls, teens, and adults of all ages.

Together the 1,400 (TSRR) participants change the future of TS care.
We’re helping researchers understand if recovering from heart surgery is more complicated for those with TS, how those with TS learn differently than their siblings, how to decrease the side-effects and inconveniences related to estrogen therapy, and the effectiveness of long acting growth hormone therapy. The Healthy Heart Study conducted every-other-year at the TSSUS conference provides free echocardiograms including some for people who had never had a heart scan before. The continuous study contributes to standards of care for those with TS and saves lives.

The TSSUS Annual Fundraising Campaign is one of our most important fundraisers and we need your help. Please support our life changing work to help someone struggling with loneliness, and the parent trying to comprehend a prenatal diagnosis of TS. We could offer hundreds of examples of the needs we support but the one thing they all have in common is TSSUS is listening. By contributing to the 2024 TSSUS Annual Campaign, you validate our work. Right now, people need TSSUS more than ever. And we need you. If you are a sustaining donor through the TSSUS Butterfly Society Monthly Giving Program or have donated to TSSUS over the last few months, we are extremely grateful.

Your donations helped TSSUS through the last few difficult years. Your support not only makes our work possible, but it also validates it. We have highlighted some of our mission work here – work that is reliant upon your financial support to continue.

We do all this for you, for your children, and we do it every day.

We just need your help to make it all possible. If not you, then who?

Can you make a gift today?

Donate Here