SDSF Board Expansion

In 2019, we are looking to expand our board! If you are interested in joining us, email us at info@shwachman-diamond.org. Tell us what you would be interested in doing and how you can help! Deadline - January 31st.

Read More


Save the Date: 10th International SDS Congress

The dates for the 10th International Congress on Shwachman-Diamond Syndrome have been announced! Save the date for April 6-9, 2020 in Cambridge, UK. 10th International Congress on Shwachman Diamond Syndrome SDSF is an important sponsor for this meeting. Our funds help bring experts, researchers, and clinicians together to present and discuss research findings, treatment, and care of patients with SDS. Please continue to support SDSF so we can support the Congress and research for patients of SDS. To read more about the SDS Scientific Congress, please visit ht...

Read More


Board Announcement

We regret to announce the resignation of Christine Jamess as president of SDSF. We wish to thank her for hard work and dedication. We wish her the best in her future endeavors.

Read More


#GivingTuesday – November 27

#GivingTuesday, observed on the Tuesday following Thanksgiving (11.27.2018), celebrates giving back. Why not give back to the Shwachman Diamond Syndrome Foundation to help fund research for a cure? In support of #GivingTuesday on November 27, 2018, Facebook is partnering with PayPal to match up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits. The match applies to fundraisers for nonprofit organizations, including birthday fundraisers and Donate buttons. Fundraisers for personal causes aren’t eligible to receive the ...

Read More


February Fundraising – Dare to Cure Rare

February 28 is Rare Disease Day. Help us raise awareness and funds for Rare Disease Day and Shwachman Diamond Syndrome this month! Join us in our challenge -- Dare to Cure Rare! We challenge you to create a fundraising campaign this month--whether it is selling t-shirts, hosting an event, creating a fundraiser on facebook, organizing a "dress down day" at your work or child's school, selling SDSF magnets or creating your own fundraiser! Join us to raise awareness and fund a cure!

Read More


SDSF at ASH Conference

"It was a true pleasure representing SDSF at the ASH Conference. Christine, Pam, Carol Kolar and I spent many hours talking to physicians and researchers from numerous countries. We discovered SDS patients in many countries, including India, Venezuela, Russia and China and others. We also were able to attend some oral presentation relevant to SDS as well as view several poster presentations. We’re happy to report that there were more presentations and information shared about SDS at this year’s conference than at any previous ASH conference."     --Joan Mowery, ...

Read More


#GivingTuesday – November 28

Giving Tuesday, observed on the Tuesday following Thanksgiving (11.28.2017), takes the focus off of the commercialism of Black Friday and Cyber Monday and instead celebrates giving back. Why not give back to the Shwachman Diamond Syndrome Foundation to help fund research for a cure? On #GivingTuesday Facebook and the Bill & Melinda Gates Foundation are matching up to $2 million of funds raised on Facebook for U.S. nonprofits and Facebook is also waiving all fees for donations made to nonprofits on Facebook. Make your facebook donation on 11.28.2017.  

Read More


Fundraising on Facebook

It is SUPER EASY to fundraise on facebook! You can add a "donate" button to a post to show your friends that you're raising money for the Shwachman Diamond Syndrome Foundation. Or, you can create a "fundraiser" on facebook to celebrate a birthday, anniversary, or other events. This is such an easy way to share your family's story, get people talking about SDS to raise awareness and to ultimately fund a cure!!! To add a donate button to your post: Click What's on your mind? on your News Feed. Type a message to encourage your facebook friends to ...

Read More


Fundraising Idea – Casual for a Cure

This is a simple fundraising idea for your place of employment, local businesses or even your child's school. Most people have heard of or participated in something like this before. Participants would get to dress down in exchange for a donation. 100% of donations go to the Shwachman Diamond Syndrome Foundation to support research and help find a CURE! Click to Download and Customize a "Casual for a Cure Flyer".

Read More


An SDS family organizes a bone marrow drive in hopes of finding a match

A family is organizing a bone-marrow registration drive in hopes of finding a match for their 6-year-old son, Wade, who needs a bone-marrow transplant. Visit Link to Story

Read More