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Collecte de fonds octobre 2020

Rencontrer l'équipe

 October 1 -7, 2023 - virtual and local options 

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Order your customized TEAM T-shirt or general event T-shirt by 9/15 to receive them on time for the event.
(Allow extra time for shipping outside the USA).

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

And just like that, the steps challenge is upon us! 

See the leaderboard in the app or right here on this page.

Instructions on how to join the steps challenge can be found below.

Have fun and see you there!

How to Join the Steps Challenge

[A printable version of these instructions is available here]

Thank you for joining the Three Million Steps Closer to #CureSDS fundraiser by starting a fundraiser or making a gift. Now it’s time to get moving! In the time period between October 9th-14th, count your steps with your favorite device/app. You don’t have to buy a device if you don’t already have one! Most smartphones have built-in or free pedometers/step counting/fitness apps available, and using the leaderboard tool ( is free, too!


How to Register to Participate in the Challenge


The registration consists of either starting a fundraiser on our donation platform (here) or making a donation on the same page. Please don't skip this step, as this is a fundraiser to support SDS research.

Note: These instructions are automatically emailed to all registered participants. Please don't distribute these instructions to non-registered participants. 

How to join the Steps Challenge via


We partnered with to power the challenge. The platform works with most popular fitness tracking apps, including Apple Health, Fitbit, Google Fit, Garmin, Strava, and RunKeeper. PRO TIP: iPhone users have Apple Health built-in. Most Android phones have Google Fit, or it can be downloaded here free of charge.

How to join our #CureSDS Group on


You can join our group (called #CureSDS) via the app or on the web. You can think of “group” sort of like an event. If you don't already use a fitness tracking app, it's great to get that set up first.

  • Option A) Join via the App!

Download the iOS app or Android app, click "Sign Up," and follow the prompts.

When asked, click the "Join a Group" option. You will be prompted to enter our group invitation code. Group Invite Code: [f60c2a55]. Or, you can go back and click on your Group Invitation Link again, and the app should be able to add you to the correct group. 

  • Option B) Join on the Web!

Simply click the invitation link and follow the prompts to login or create an account if you are new to If the link doesn't work, paste this URL into your web browser.


Alternatively to the invitation code, you may be able to search or enter our group name. The group name is #CureSDS.

How to join your favorite Team within the #CureSDS Group


NOTE: Teams will only be available during the challenge period starting on October 9th!!!

  • During onboarding, you will be prompted to join your team. Simply click the Join button to do so. 

  • If you don't see your team (which may happen at the beginning of the challenge period), don’t worry, you can join later. Your steps and other challenge contributions will add up to your team as soon as you join.

  • To see all the Teams in your group, and join one, just go to your Settings >Teams page. All available Teams within our #CureSDS group are listed here, and you can join or leave simply by clicking the button to the right of the team name.

Note for team captains: Our group allows "user generated"

teams. You can create a new team by clicking the "

+ Add Team" link at the top right of the teams list. 

How to join the challenges


NOTE: Challenges will only be available during the challenge period starting on October 9th!!!


Once the challenges are active, your step counts will automatically be added up to the challenge and your team if you join one.  


You're done! Have fun!


Since the event is virtual, there are plenty of safe options for observing any recommended COVID-19 precautions. You can even do the challenge at home.


Questions / Comments? Contact us at the SDS Alliance: or +1-617-329-1838.

For technical questions, please first check out the Getting Started for Users and's General FAQ.

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