Recaudación de fondos anual de TSSUS 2020 Campaña
There is something quite comforting when
the Turner syndrome community comes together.
Together we lift one another, even if it means doing it over and over until someone believes their differences are not imperfections. Being with others touched by TS makes a world of difference to those living with the challengesof Turner syndrome.
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 36 years. Not only do we advance knowledge, facilitate research,and provide support, we provide hope andacceptance for anyone who is struggling witha 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 generational 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 have resumed 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 TSSUSNational Turner Syndrome Conference in Houston this past Summer, more than645 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 1,150 TSSUS Turner Syndrome Research Registry (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 at the TSSUS conference provided 140 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 2023 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.
Cada año, en este momento, nos acercamos a los miembros de la comunidad del síndrome de Turner y sus amigos y familiares para que consideren hacer una donación para la Campaña Anual de Recaudación de Fondos de TSSUS. Este año, su apoyo es más importante que nunca.
Como todos hemos visto el mundo cambiar tan drásticamente en los últimos meses, las donaciones caritativas y el sector sin fines de lucro se han visto especialmente afectados por las recesiones de la economía actual.
En la Sociedad del Síndrome de Turner de los Estados Unidos (TSSUS), hemos tenido que hacer algunos sacrificios dolorosos. No tuvimos más remedio que cancelar la Conferencia Nacional del Síndrome de Turner de TSSUS 2020, tuvimos una reducción de personal y nuestros eventos nacionales de recaudación de fondos, los TSSUS Chasing Butterflies Walks, fueron cancelados.
En nuestros casi 35 años de historia, una cosa se ha mantenido constante y es nuestra dedicación a las personas con síndrome de Turner y las personas que las aman. Si bien nuestro trabajo para apoyarlo a usted y a sus familias puede verse un poco diferente este año, nos hemos adaptado, ajustado y avanzado con un ojo atento en estar presentes, disponibles e innovadores en el apoyo a la comunidad TS.
La Campaña Anual de TSSUS es una de las actividades de recaudación de fondos más importantes de nuestro año, y este año lo es aún más. Ahora mismo, te necesitamos más que nunca. Si ha respondido a nuestra llamada y ha donado durante los últimos meses, estamos muy agradecidos por su apoyo y le animamos a que considere la posibilidad de donar a la Campaña Anual de TSSUS.
Lo alentamos a que se convierta en un donante mensual de Butterfly Society, únase a nuestras filas de donantes principales con una donación de $ 500 o más, haga una sola donación. Ningún regalo es demasiado pequeño.
Si bien entendemos que no todos están en condiciones de dar, sabemos que muchos lo están. Necesitamos su ayuda hoy para continuar con los programas, servicios y eventos para la comunidad de TS.
Por favor contribuya tan generosamente como pueda en apoyo de su sociedad - la Sociedad del Síndrome de Turner de los Estados Unidos.