In this issue: SDS Alliance celebrated and raises awareness about Shwachman-Diamond Syndrome and inspires action in the community
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!
What is Shwachman-Diamond Syndrome Global SDS Awareness Day and Action Week?
Global SDS Awareness Day and Action Week is about coming together and raising awareness as a united global patient community.
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, and so Global SDS Awareness Week was born.
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:
Global SDS Awareness Day is November 7th
and leading up to it,
Global SDS ACTION Week is November 1-7th
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?
New!
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. See an example (Eszter's video) on the SDS Alliance webpage for Awareness Week.
We will use your videos to raise awareness about SDS and to inform our programs to best support your needs!
Why was November chosen for SDS Awareness?
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 on section 11 or Chromosome 7, giving a nod to the date of 11.7 or November 7.
New SDS Awareness T-shirt Designs Now Live!
Click on the design to order.
Multiple colors and styles are available, including t-shirts, hoodies, and tank tops.
International shipping is available.
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 participate in SDS Awareness Day and Action Week?
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.
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.
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:
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.
The Action Checklist on top of this post is an easy way for you to get started and take action that matters. Together, we can move mountains.
We created many resources to set you up for success. Check out the media section of our website for free downloads.
Why Community Matters
Being part of a community provides emotional support and access to the latest research and treatment options. SDS Alliance advocates for awareness, research funding, and educational resources that can greatly enhance the quality of life for those affected by SDS.
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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