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Resources for researchers, doctors, and other health care providers, related to Shwachman-Diamond Syndrome. Resources for Doctors and Researchers Join the SDS Alliance Network Diagnostic and Treatment Guidelines Research Tools Scientific Meetings

It's finally here: the first ever virtual global fun run/walk event to support Shwachman-Diamond Syndrome (SDS) research! Fundraiser October 2020 5 Million Steps Closer Annual Global Fundraiser The Event for You, Your Friends, Family, and Colleagues to Have Fun and Support Research. November 1-7, 2025! Note: This event has passed, and we are planning the next one. Let us know if you prefer spring or fall! Stay tuned! Anywhere (Virtual or Local if You Choose) Join the SDS Alliance's annual "Million Steps Closer" fun-run challenge fundraiser, a virtual event every fall. 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). Register here! Team T-shirts Start or Join a Team! 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 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! Strat a Team Curious about past events? Check out the results of our 2024 , 2023 and 2022 Million Steps Closer to #CureSDS fundraiser! Watch Rebecca's Video on Fundraising Tips and Tricks This presentation was part of SDS POPS 2025. 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. Order Design 1 Order Design 2 Email Us to Customize The Details When? November 1-7 Where? Virtual! Run/Walk/Roll wherever you like! Plus local events hosted by community members. What? Fun!!! Fundraise and Run/Walk/Roll in your community! Why? To build community and raise funds for SDS research! Register now! Join the SDS Alliance's annual fun run challenge fundraiser! This is a virtual event and will take place November 1-7, 2025, to coincide with the Global SDS Action Week and Awareness Day . 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 of the event. 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 "Start a Fundraiser" on our fundraising campaign 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 November 1-5, 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 an awesome insulated stainless water bottle* 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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All Blogs All Posts SDS Alliance News SDS Patient Stories and News SDS Science News SDS Alliance Partner News SDS Science Snapshots In Loving Memory Log in / Sign up Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA 2 hours ago SDS Science Snapshots SDS & Science Snapshots (2024-08-25) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Aug 17 SDS Science Snapshots New Publication by the SDS Alliance Highlights SDS as a Therapeutic Target. SDS & Science Snapshots (2024-08-17) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Aug 4 SDS Science Snapshots SDS & Science Snapshots (2024-08-03) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Jul 20 SDS Science Snapshots SDS & Science Snapshots (2024-07-20) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Jul 13 SDS Science Snapshots Free Genomic Sequencing for SDS through New Collaboration with Rare Genomes Project. SDS & Science Snapshots (2024-07-13) Eszter Hars, Ph.D., President and CEO, SDS Alliance Jul 7 SDS Patient Stories and News Octavian's SDS Story: A Rare Gem with EFL1 Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Jun 8 SDS Science Snapshots SDS & Science Snapshots (2024-06-08) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Jun 1 SDS Science Snapshots SDS & Science Snapshots (2024-06-01) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA May 18 SDS Science Snapshots SDS & Science Snapshots (2024-05-18) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA May 11 SDS Science Snapshots SDS & Science Snapshots (2024-05-11) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA May 4 SDS Science Snapshots SDS & Science Snapshots (2024-05-04) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Apr 27 SDS Science Snapshots SDS & Science Snapshots (2024-04-27) Eszter Hars, Ph.D., President and CEO, SDS Alliance Apr 20 SDS Science Snapshots SDS Alliance Presents at the International INNOCHRON Scientific Meeting. SDS & Science Snapshots (2024-04-20) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Apr 13 SDS Science Snapshots SDS & Science Snapshots (2024-04-13) Eszter Hars, Ph.D., President and CEO, SDS Alliance Apr 6 SDS Science Snapshots SDS & Science Snapshots (2024-04-06) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Mar 30 SDS Science Snapshots SDS & Science Snapshots (2024-03-30) Eszter Hars, Ph.D., President and CEO, SDS Alliance Mar 24 SDS Science Snapshots SDS & Science Snapshots (2024-03-23) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Mar 16 SDS Science Snapshots SDS & Science Snapshots (2024-03-16) Ashley Thompson, MS, CGC, Genetics Project Manager @ SDSA Mar 9 SDS Science Snapshots SDS & Science Snapshots (2024-03-09) Eszter Hars, Ph.D., President and CEO, SDS Alliance Mar 3 SDS Patient Stories and News Alex's SDS Story and Diagnostic Odyssey (US)

Sun, May 19 | Virtual event Global SDS Family Coffee Chat Monthly virtual get-together to build community and support. Registration is closed See other events Time & Location 19 more dates May 19, 2024, 3:00 PM – 5:00 PM EDT Virtual event Select Upcoming Date About the event Global SDS Family Coffee Chat Register at www.sdsalliance.org/coffee to receive the meeting link and details. The goal and vision for this program is to connect SDS families worldwide. Living with ultra-rare diseases like SDS can feel very isolating, and family connections are an essential source of comfort, information, knowledge, and support. This virtual meeting is for patient families by patient families. The organizers - also part of the community - are creating infrastructure and support for the community to thrive. For this meeting, the SDS family community is defined as people with a genetically confirmed diagnosis of SDS or an SDS-like syndrome (based on the genes SBDS, EIF1, SRP54, and DNAJC21) and their direct caregivers (parents, legal guardians, or partners). Please only join if you meet these criteria. If you are seeking genetic testing and need guidance, please contact genetics@SDSAlliance.org. Register at www.sdsalliance.org/coffee to receive the meeting link and details. Login and call-in information will be emailed to participants who sign-up before the meeting. If we don't already know you, we may reach out to you to welcome you to the community. We look forward to connecting soon! Show More Share this event