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Writer's pictureEszter Hars, Ph.D., President and CEO, SDS Alliance
Nov 2

Announcing the Winners of the 2024 Million Steps Closer to #CureSDS Challenge

In this issue: The results of the 2024 Million Steps Closer to #CureSDS Challenges are in


Welcome to our timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email genetics@SDSAlliance.org or message us on Facebook! This is all for you!


Event banner with results (steps taken and funds raised) for the Million Steps Closer to #CureSDS annual fundraiser. The logo features a sneaker with wings, surrounded by the event name and Turn Hope into Action. Support Shwachman-Diamond Syndrome research.

Shwachman-Diamond Syndrome community and impact with the 2024 Million Steps Closer to #CureSDS fundraiser


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

 

The Million Steps Closer to #CureSDS annual fundraiser took place October 25-31, 2024.

Anywhere (Virtual or Local if You Choose). Shwachman-Diamond Syndrome is global.

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This year, we hosted the 5th annual "Million Steps Closer" fun-run challenge fundraiser, a virtual event every October. Participants turned hope into action and took steps to #CureSDS - we could walk, run, crawl, roll, swim, or lean back and support those who do by making a donation. The steps (and fitness) counting challenges were managed through a free app and are optional.


The Purpose: To 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!

Roadmap


Teams Amplify Impact!

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Participants invite family, friends, neighbors, colleagues, or classmates to participate! Registration is free! It's easily invite others to join in your fundraising efforts! Get in the spirit for next year!


Overall community goal: A million steps or more!

This year, once again, we had a small but committed and dedicates community step up to the challenge.

  • 4 teams and

  • 17 participants took

  • an impressive total of 1,004,878 steps together


Thank you everyone who stepped up and had fun with us, while meeting critical fundraising goals for research! See you again next year!


And the 2024 Challenge Winners are:


  • Laszlo H: Most Steps taken as an individual: 94,709 steps

  • Team Joyce: Most Steps taken as a team: 353,933 steps

  • Team Declan: Most Funds Raised as a team: $13,864 with this fundraiser and a charity hockey game in the spring.

The winners of the 2024 Million Steps Closer to #CureSDS fundraiser and challenge. Laszlo, Team Joyce with Joyce Fitz, and Team Declan.

Community and Fundraising


This event is impactful for both coming together as a community that can support each other, and also as a powerful driving force for research funding. The SDS Alliance is proud to host this event every year.


These themes are also carried forward in the inaugural

 

Global SDS Awareness Day is November 7th

 

and leading up to it,

​

Global SDS ACTION Week is November 1-7th

campaigns.


Take Action to Make an Impact!

Here is a list of simple actions you can take, one or two a day during Global SDS Action Week - or anytime throughout the year. Click on the list to download a PDF with clickable links. How will you take action this year?

SHWACHMAN-DIAMOND SYNDROME ALLIANCE Global SDS Awareness Day & Action Week. Graphic inspired by the classic 7-Eleven logo and representing November 7. The 7 also symbolizes a ribbon for awareness. Global SDS Awareness day & action week, www.sdsalliance.org; A graphic representing a checklist ACTIONS FOR IMPACT: Joined SDS-GPS to drive research; Shared info on US ICD-10 code for SDS (D61.02) with my providers; Joined the SDS Alliance Mailing List and Global Network; Became a monthly sustainer / donor to a patient advocacy organization; Updated my registry info and/or shared a biosample (BMB); Learned about SDS research: SDS POPS or SDS Alliance blog; Donated to or fundraised to accelerate SDS therapies; Stepped up at the Million Steps Closer annual fundraiser; Built connections with and welcomed new SDS community members; Shared my SDS story on social media, meetings, or blog; Volunteered or offered my help at an SDS nonprofit; Shared my voice through a vocal video; Shared SDS information on social media; volunteered; other

The Role of SDS Alliance


We at the SDS Alliance are not only passionate to raise awareness about SDS, patient's unmet needs, and our drive for progress, but we are equally if not more passionate about creating opportunities for YOU to make a difference.


Conclusion


Shwachman-Diamond Syndrome is a complex genetic disorder that requires coordinate care, caring community support, and strategic investment into research and research infrastructure to de-risk therapy development. Organizations like Shwachman-Diamond Syndrome Alliance (SDS Alliance) play a crucial role in providing support and resources for those affected and the SDS community at large. Join us and raise awareness to help others learn about this important condition.

For more information, visit SDS Alliance and join a community dedicated to improving the lives of those impacted by Shwachman-Diamond Syndrome.



 

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A screenshot of an SDS Alliance blog post, with an arrow and circle highlighting how to signup for updates.


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