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Collecte de fonds octobre 2020

Rencontrer l'équipe

SDS community participating in the Million Steps Closer to #CureSDS fundraiser with matching event t-shirts

The Event for You, Your Friends, Family, and Colleagues to Have Fun and Support Research.

 
October 25-31, 2024
Anywhere (Virtual or Local if You Choose)

This year's event has concluded. See the results in our blog post, here.

See you again in 2025! Details coming soon.

Join the SDS Alliance's annual "Million Steps Closer" fun-run challenge fundraiser, a virtual event every October. 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 fitness) counting challenges are managed through a free app and are optional (see below).

A graphic with the event logo: a runing shoe with wings, 5 million steps closer to #curesds, Turn hope into Action; event details reflecting what's on the page, plus Thank you to our 2024 trailblazer sponsor X4 Pharmaceuticals. Cure Shwachman-Diamond Syndrome fundrasier

Support Research!​​​

 

This fundraiser is a fun and uplifting way to join us and make a difference. As always, 100% of funds raised from the community go to SDS research and infrastructure to accelerate therapy development, following our roadmap. By participating in this event, you are playing an integral part in driving progress!

Start a Team to Amplify Your Impact!

Invite your family, friends, neighbors, colleagues, or classmates 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!

SDS community participating in the Million Steps Closer to #CureSDS fundraiser with matching event t-shirts
T-Shirts
SDS community participating in the Million Steps Closer to #CureSDS fundraiser with matching event t-shirts

Get in the Team Spirit with Team T-Shirts!

This year, you can choose between multiple designs.
 

  • Design 1 celebrates the Million Steps fundraiser with a sneaker with wings

  • Design 2 celebrates Global SDS Awareness Day and Action Week with a November 7 design

 

Order by October 1st to receive it in time for the event!

Both can be customized with your team name. Email us at connect@sdsalliance.org with your team name and color preference, and we will set up a custom campaign page for you to share with your team. Specify whether you would like to distribute the T-shirt yourself locally, of id team members should be able to order and get their purchase shipped to them.

Million steps closer to #CureSDS event t-shirt Shwachman-Diamond Syndrome Alliance
Global SDS Awareness Day and action week November 7 event t-shirt Shwachman-Diamond Syndrome Alliance

Curious about past events?

Check out the results of our 20242023 and 2022 Million Steps Closer to #CureSDS fundraiser!

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 Count.it.

Join the SDS Alliance's 5th annual fun run challenge fundraiser! This is a virtual event and will take place October 25-31, 2024. 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. Registered participants will receive detailed instructions on how to join and/or create teams via email in October. The main challenge will be step-counting during the week (October 25-31). 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 5 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 (see above), 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 10/01 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 25-31, 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 fundraising page and will send you the following*:

Raise $50: Get a canvas tote bag*

Raise $500: Get a tote bag, plus a 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.

 

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Questions? Email us at connect@SDSAlliance.org

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