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Recaudación de fondos de octubre de 2020

Recaudación de fondos de PASOS 2022

The 2023 STEPS Fundraiser is now finished. Thank you to the SDS community for stepping up and making it a huge success again. Please check out our blog post, here. See you again in October 2024! Exact date TBD.

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The Teams
Leaderboard
(Live)

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 ¡REGÍSTRESE ANTES DEL 27 DE AGOSTO PARA RECIBIR UNA CAMISETA GRATUITA DEL EVENTO! 

Bienvenido a la página de recaudación de fondos DOS MILLONES DE PASOS MÁS CERCA DE #CURESDS. Puede encontrar todos los detalles aquí.​

  • ¿Cuándo? 20 al 26 de septiembre de 2021

  • ¿Dónde? ¡Virtual! ¡Corre/camina/rueda donde quieras!

  • ¿Qué? ¡¡¡Divertida!!! ¡Recaude fondos y corra, camine o ruede en su comunidad!

  • ¿Por qué? ¡Para construir una comunidad y recaudar fondos para la investigación de SDS!

  • ¿Cómo? ¡ Regístrese aquí !
     

Con esta campaña de recaudación de fondos, estamos recaudando fondos para acelerar la terapia y el desarrollo de curas para el síndrome de Shwachman-Diamond, un raro trastorno genético de predisposición al cáncer que afecta a miles de niños y adultos en todo el mundo.

La misión de Shwachman-Diamond Syndrome Alliance es acelerar el desarrollo de terapias y una cura para SDS, en particular para eliminar el riesgo de leucemia mortal en SDS, en un período de tiempo que es importante para nuestros niños y miles de pacientes con SDS en todo el mundo. Nuestro enfoque es la investigación y el desarrollo: recaudamos fondos para la investigación más avanzada, construimos colaboraciones a nivel mundial e invertimos en herramientas de investigación críticas (como el proyecto del ratón) e infraestructura, ahora.

 

Sin duda, dos millones de pasos son demasiados para una sola persona. Pero juntos, los pasos se suman. ¡Podemos llegar allí!

 

¡Regístrese arriba y recibirá los detalles sobre cómo unirse al desafío y seguir/registrar sus pasos!

Now in its fourth year, this is the only global, annual fundraising event, dedicated to SDS research. In line with our mission to #CureSDS through our strategy & roadmap, we are raising funds to accelerate therapy and cure development for Shwachman-Diamond Syndrome, a rare genetic cancer predisposition disorder that affects hundreds to thousands of children and adults worldwide.

Four million steps are too much for any single person. But together, the steps add up. Together, we can get there!

Curious about how we did last year? Check out the 2022 recap, here:

Join the SDS Alliance's 4th annual fun run challenge fundraiser! This is a virtual event and will take place October 1-7, 2023. Everyone is invited to turn hope into action and take steps to #CureSDS - you can walk, run, crawl, roll, swim, or lean back and support those who do by making a donation. 

 

The steps and run challenges - step counting, miles, and more - will be managed on the count.it app. We are currently evaluating whether to use their new or classic app, and will make it available mid September. Registered participants will receive detailed instructions on how to join and/or create teams via email prior to 10/1/2023. The main challenge will be step-counting during the week (October 1-7). Let us know if you would like to see additional types of fitness challenges!

 

Invite your family, friends, and neighbors to participate! Registration is free! See the instructions below to learn how you can set up a fundraising page for your child, yourself, or a loved one, and easily invite others to join in your fundraising efforts! As always, 100% of funds raised from the community go to SDS research accelerating therapies, with no overhead! This year, we continue expanding the toolbox for SDS research and start to seed fund drug screens and development as part of our roadmap. Through fundraising and donations, you will play an integral part in driving progress!

How to participate:
 
Step 1. Register

 

Register for the 4 Million Steps Closer to #CureSDS fun run by

a) setting up a personal fundraising page (team), or

b) supporting the fundraiser of your loved one!

 

To set up a personal fundraising page (also known as a team), simply click "I Want To Fundraise For This" on this page, follow the instructions, and customize it with your own content! Everyone loves to see photos of your SDS hero! Pro tip: Add a link to your custom T-shirt campaign from step 2! 

To register by supporting the fundraiser of your loved one, simply make a donation in any amount to their team/fundraising page! You may have already received the direct link to their page from them. If not, you can find the teams on the main fundraising page.

 

Step 2. T-shirts (optional) 

 

Order the event T-shirt to get into the team spirit. We have general event T-shirts, AND we can create custom T-shirts customized with your team name. If you are a team captain, contact us to get your custom T-shirts up and running. Order by 9/14 to receive them in time for the event, and allow extra time for shipping outside the USA.

 

Step 3. Spread the word

 

Share your fundraising page via social media and email and start raising funds for SDS research! Expand your reach by asking family and friends to set up their own fundraisers or promote yours! 

Increase Awareness! Post photos with your family/friends during the event and let us know who you are running for! Use hashtag #StepsToCureSDS on all social media platforms!

 

Step 4. Walk/run/roll...

 

During the week of October 1-7, hook up your favorite tracker to the count.it app (instructions will be emailed to you) and start taking steps (walk, jog, roll, dance,...) to #CureSDS. Most importantly, have fun!

Step 5. Get Rewards

Your fundraising efforts are so important and impactful toward accelerating research for therapies and cures, we want to thank you and reward you for your efforts. Raise funds on your personal fundraising page and will send you the following*:

Raise $40: Get a canvas tote bag*

Raise $400: Get a tote bag, plus an event mug with a delectable chocolate bomb*

Challenge winners in each category will get bragging rights and both gifts* above!

*Items are subject to change, and we will reach out to you first to confirm your shipping address, preferences, and size.

 

~~~~~~~~~

Questions? Email us at connect@SDSAlliance.org

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Alianza para el síndrome de Shwachman-Diamond, Inc.

Social:

Correo electrónico : connect@SDSAlliance.org

Teléfono : +1-617-329-1838

Correo:  PO Box 2441, Woburn, MA 01888

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La Alianza del Síndrome de Shwachman-Diamond (SDS Alliance) es una organización sin fines de lucro 501(c)(3) dedicada a construir un mundo donde el Síndrome de Shwachman-Diamond (SDS) sea curable, a través de la investigación y la participación en actividades de promoción y educación.

 

SDS Alliance reúne a familias de pacientes, investigadores, médicos y otras partes interesadas diversas para comprender, diagnosticar y tratar mejor este devastador trastorno genético de predisposición al cáncer. SDS Alliance fue lanzada en 2020 por los padres de un niño con SDS, que son investigadores biomédicos y empresarios.

 

El liderazgo y los asesores científicos y médicos de SDS Alliance son médicos e investigadores experimentados que se concentran en combinar la perspectiva del paciente y la familia con soluciones basadas en la mejor evidencia científica disponible.

 

Las familias de todo el mundo son fundamentales para acelerar la misión de SDS Alliance de mejorar los resultados para todos los pacientes con SDS, especialmente las poblaciones de diversos orígenes que no tienen posibles coincidencias de donantes de células madre. SDS Alliance eleva intencionalmente las voces de personas de diversos orígenes, la comunidad LGBTQ+, personas con discapacidades y grupos marginados, ya que aportan información crítica y hacen avanzar la misión de SDS Alliance.

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