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Global SDS Awareness Week

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Welcome to the annual GLOBAL SDS AWARENESS WEEK information page!

This page provides you with access to all the great initiatives by the SDS community - SDS patient advocacy groups and SDS superhero families from around the world.

History

In 2020, the SDS Alliance reached out to all the international SDS patient organizations to discuss the idea of creating an annual Global SDS Awareness event, proposing a time in spring or fall to avoid the busy winter holiday and summer vacation seasons. Our colleagues at SDS UK proposed late April as the time to coincide with Dr. Shwachman's birthday. All organizations that responded - including SDS UK, SDS Netherlands, and SDS Foundation (US) - supported this concept and timing. Global SDS Awareness Week is about coming together and raising awareness as a united global patient community. (It is not about celebrating one particular doctor, country, or achievement).

Now it is time to revisit the season, duration, and framing for the global campaign. Please provide feedback by emailing connect@SDSAlliance.org.

Since Dr. Shwachman was mentioned above, here is a little bit of context. Dr. Shwachman was a prominent gastroenterologist in Boston in the 1960s and developed deep expertise in caring for Cystic Fibrosis (CF) patients and "atypical" CF patients. This was before SDS was recognized as a distinct disorder, and many patients were categorized as "atypical CF." Drs. Shwachman and Diamond, as well as Dr. Bodian, were instrumental in defining Shwachman-Diamond Syndrome with their landmark publication in the journal Pediatrics in 1964, entitled "The Syndrome of Pancreatic Insufficiency and Bone Marrow Dysfunction." It is due to this publication that the disease received its name, "Shwachman-Diamond Syndrome". About 40 years later, Dr. Johanna Rommens at SickKids in Toronto, Canada, identified the main gene responsible for SDS. The gene (and corresponding protein) was named SBDS for Shwachman-Bodian-Diamond Syndrome. 

Purpose

It is our hope that more and more organizations and families will participate over time so that this campaign can grow and reach more families, medical providers, and researchers.

Raising awareness can save lives. Any diagnosis made sooner lessens the burden and suffering of the diagnostic odyssey, and life-saving interventions can begin sooner. The SDS community can grow to support more targeted research, accelerating the pace toward therapies and cures.

How to participate

 

Both patient advocacy groups AND individual patients and families are invited to host events in their communities, be it a bake sale, gala, golf tournament, walk, or any event that works for you and your community. Let us know if we can help in any way! We would love to post your events below and help spread the word.

If you have questions about any particular event or campaign, please reach out to the hosting organization or family directly. Donations to any of the participating SDS organizations are always welcome and appreciated. Visit their respective websites for details.

If you are an SDS patient or family looking for peer-to-peer support or local support organizations, please check out the list on the SDS Alliance website, here. General information about SDS for patients and families can be found here

Global Events

T-shirt Design Contest and Campaign

Details here

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SDS Story Series

Huge thanks to all the SDS families from around the world for sharing their stories!

 

The stories are available on the SDS Alliance social media channels:

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To raise awareness about SDS as part of the Global SDS Awareness Week in 2021, the SDS Alliance is launching a series of SDS Stories on all it's website, Facebook, and Twitter. We are looking for stories from around the world, the good, the bad, and the ugly :). We want to raise awareness that SDS manifests itself and impacts families in a wide variety of ways, so that more patients can be diagnosed sooner and benefit from community support and better treatments. We also want to show the world that the SDS community is strong and worthy of investment into new therapies and cures. Join us by sharing YOUR story. 

Visit our Patient Stories page, contact the SDS Alliance on Facebook or email us at connect@SDSAlliance.org

National Events

ADD YOUR EVENT HERE by emailing connect@SDSAlliance.org

Local Events

ADD YOUR EVENT HERE by emailing connect@SDSAlliance.org

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