Global SDS Action Week
and Awareness Day
​What's Global SDS Awareness Day & Action Week?
Global SDS Action Week and Awareness Day is about coming together and raising awareness as a united global patient community.
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In 2020, 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, and so Global SDS Awareness Week was born.​​
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Over the years, the event has not reached its full potential, so we set out to reconsider the date. We polled the international patient community for a new date/frame preference. You voted and we listened!
​​​Based on your feedback, the new date(s) are:
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Global SDS ACTION Week is November 1-7
culminating in SDS
Awareness Day on November 7
Take Action to Make an Impact!
This year, we put the whole week in one place. Our new interactive guide gives you one action a day, with a short note on why it matters and a link to get started. Check off what you do. Skip what doesn't fit your life right now. Every action is optional, and you can do them in any order, anywhere in the world.
Share a vocal video!
We partnered with Vocal Video to bring you a super easy way to share your voice by answering a few simple questions. Here is Eszter's example. Click here or below to share your voice, today! This tool walks you through a few questions and creates a video of about 3 minutes or more, depending on how much you want to share. Coming soon, we may offer a shorter option. Let us know what you think.
We will use your videos to raise awareness about SDS and to inform our programs to best support your needs!
Get your T-shirts to support the cause!
Click on the design to order.
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Multiple colors and styles are available, including t-shirts, hoodies, and tank tops.
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International shipping is available.
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If you would like to have them printed locally in your country or community, email us at connect@sdsalliance.org and we will be happy to share the design file!
​​Why November?
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. A landmark publication in the journal Pediatrics in 1964, entitled "The Syndrome of Pancreatic Insufficiency and Bone Marrow Dysfunction" was published by Drs. Shwachman and Diamond in November 1964. It is due to this publication that the disease received its name, "Shwachman-Diamond Syndrome". About 40 years later, Dr. Johanna Rommens and her team 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 to acknowledge Dr. Bodian's contribution to the field. Coincidentally, the SBDS gene happens to be located at 7q11, meaning chromosome 7, section 11, giving a nod to the date of 11.7 or November 7.
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Why participate?
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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. We have reached out to all international SDS patient groups to invite them.
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Each action connects to research, better care, or a stronger community. More families in SDS-GPS and the PACER course makes a stronger case to researchers and funders. Sharing the ICD-10 code and genetic testing information helps more people get diagnosed sooner, so treatment can begin sooner.
The SDS community can grow to support more targeted research, accelerating the pace toward therapies and cures.
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Additional ideas to take action
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.
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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.
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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.
SDS Story Series
Huge thanks to all the SDS families from around the world for sharing their stories!
The stories are available on our blog (Patient Stories) and Social Media Channels.
One meaningful action you can take this SDS Action Week and Awareness Day is to share your story. We are looking for stories from around the world, because SDS affects families in a wide variety of ways. Sharing them helps more patients get diagnosed sooner and find community support and better treatments. It also shows the world that the SDS community is strong and worthy of investment toward new therapies and cures.
Share your story for our blog by emailing us or using the upload form
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Visit our Patient Stories page, contact the SDS Alliance on Facebook or email us at connect@SDSAlliance.org.