Global SDS Action Week: Easy Actions You Can Take This Week or Anytime
Welcome to SDS Spotlight — our monthly series where Eszter shares a quick update on what we're working on, what we're excited about, and how YOU can get involved. Each month features a short video and a deeper dive right here on the blog.
In this month's SDS Spotlight, Eszter Hars, Ph.D., molecular biologist, SDS Alliance CEO, and mother of a child with SDS, shares what Global SDS Action Week is about and how to take part, this week or any time.
What is Global SDS Action Week?
Global SDS Action Week runs November 1 to 7 and culminates in SDS Awareness Day on November 7. This year, we created an interactive checklist for you, with one simple action a day you can do anytime, anywhere.
Check off what you do. Skip what doesn't fit your life right now. Every action is optional, you can do them in any order, and you can do them anywhere in the world.
Full details about the week are on our Action Week page.
Why November 7?
Shwachman-Diamond Syndrome got its name from a paper published in November 1964 by Drs. Shwachman and Diamond, who were practicing at Boston Children's Hospital at that time. In 2003, the gene responsible for most SDS cases was discovered and published by Dr. Rommens at Sick Kids in Canada. The gene was named SBDS, and is located on Chromosome 7 (section 11), also known as 7q11, which reads as 11.7.
So the date November 11 represents the name day or birthday of SDS, and represents the whole SDS community, whatever your gene or diagnosis.
The seven actions
We compiled a list of seven easy actions you can take, one for each day of SDS Action Week. All serve a purpose of coming together as a community and support research and therapy develpment. Join us!
Day 1 (November 1): Read the Voice of the Patient report. A year ago, our community shared what life with SDS is really like. Those words became a report that researchers, drug developers, and regulators can now read, in your own words. Read the report.
Day 2 (November 2): Make SDS visible in the medical record. In the US, SDS has its own ICD-10 code, D61.02. Share it with your medical team and ask them to confirm it is in the chart. A specific code helps make SDS visible in medical records and research. Read more. Outside the US, SDS Alliance is working on the groundwork for codes in other countries and regions. If you have a medical or coding background and would like to help, email connect@sdsalliance.org.
Day 3 (November 3): Add your voice to the research. Join SDS-GPS, our global survey platform, or complete the gene therapy perspectives survey. What you share helps shape research and how clinical trials are designed. Your privacy is protected. Join SDS-GPS, log in, or read about privacy.
Day 4 (November 4): Start the SDS PACER Course. It is free and self-paced, with six modules that help you understand the science and take part in research discussions. It also helps prepare you to serve on research and drug development advisory boards. Start the course.
Day 5 (November 5): Explore our free guides. School success, the school letter tool, and the interactive gene therapy guide are all in one place. Share one with a teacher, a doctor, or a newly diagnosed family. See all guides.
Day 6 (November 6): Give. A monthly gift of any amount helps us give SDS patients and families more birthdays to celebrate, and it shows strength in numbers. Join Monthly Giving Allies. Prefer a one-time gift? Donate here.
Day 7 (November 7): Share your story. Post about your life with SDS, or share one fact about it, wherever you are. To contribute more privately, find your chapter in the Essential Guide story tool. Pseudonyms are welcome. Find your chapter.
US families: the checklist also has one optional bonus action.
Meet Joyce
Joyce is a young advocate with SDS who asked her New Jersey assemblywoman to recognize November 7 as Shwachman-Diamond Syndrome Awareness Day. Assembly Joint Resolution 119 passed the Assembly 77 to 0 and the Senate 40 to 0, and Gov. Mikie Sherrill signed it on August 6.
Watch our full conversation with Joyce, and read how she did it:
Why we are doing this
Awareness is only the start. What makes a difference is what actions we take. Each of these actions connects to research, better care, or a stronger community: more voices in SDS-GPS, more families who understand the science, and more support for the work ahead.
The checklist is ready anytime, so every action works whenever you are ready.
Which action will you take first? Tell us on our social posts, or email us at connect@sdsalliance.org.
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