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Collecte de fonds octobre 2020

Rencontrer l'équipe

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

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 Event T-shirts are now available in our Bonfire store, here!

CUSTOM TEAM T-SHIRTS are available by request. Email us at with your team name and color preference, and we will do the rest. Or contact Eszter on Facebook. 

C'est enfin là : le tout premier événement mondial de course/marche amusant et virtuel pour soutenir la recherche sur le syndrome de Shwachman-Diamond (SDS) !

Avec cette campagne de collecte de fonds, nous collectons des fonds pour accélérer le développement d'une thérapie et d'un remède contre le syndrome de Shwachman-Diamond, un trouble génétique rare de prédisposition au cancer qui affecte des milliers d'enfants et d'adultes dans le monde entier.

La mission de la Shwachman-Diamond Syndrome Alliance est d'accélérer le développement d'une thérapie et d'un remède contre le SDS - en particulier pour éliminer le risque de leucémie mortelle dans le SDS - dans un délai qui compte pour nos enfants et des milliers de patients atteints de SDS dans le monde. Notre objectif est la recherche et le développement : nous collectons des fonds pour la recherche la plus avancée, construisons des collaborations à l'échelle mondiale et investissons dans des outils et des infrastructures de recherche essentiels, dès maintenant.

Un million de pas est certainement trop pour une seule personne. Mais ensemble, les étapes s'additionnent. On peut y arriver !

Inscrivez-vous ci-dessus et vous recevrez une invitation par e-mail à rejoindre le défi et à suivre vos pas sur

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 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 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

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