The dates for the 9th International Congress on SDS have been announced!

The dates for the 9th International Congress on Shwachman-Diamond Syndrome have been announced.... APRIL 8-11, 2018 Texas Medical Center in Houston, Texas

Connor’s Heroes nonprofit hopes to encourage pediatric cancer research in Richmond

“I’m hopeful that as more and more people in the local community learn that there is pediatric cancer research happening right here in Richmond, that they don’t have to send a check to St. Jude’s or St. Baldrick’s, they can actually donate to Connor’s Heroes and it goes right to research that’s happening here,” said Lisa Goodwin, the group’s executive director and Connor’s mom. Dr. Seth Corey and his team are able to manipulate the zebrafish genes so the fish have features similar to children with SDS.

Shop Amazon Smile for Valentine’s Day

Are you going to buy your sweetheart a Valentine's Day present? Why not buy it on smile.amazon.com and make SDSF your charity? That is really showing your love.

2017 Rare Disease Day (Feb. 28) Fundraising Challenge

In honor of Rare Disease Day on February 28, 2017, we’re challenging you to show your support for SDS patients and DONATE ANY AMOUNT to help patients afflicted with Shwachman-Diamond Syndrome. Please visit our RARE DISEASE DAY FUNDRAISING WEBSITE to help us reach our goal of $3,000 before February 28, 2017. Help us spread the word about our Rare Disease Day Fundraising Challenge by sharing via social media and/or email.

2016 ASH Conference

Shwachmand Diamond Syndrome Foundation was at the ASH (American Society of Hematology) Annual Meeting in San Diego, CA December 3-6, 2016. Here are a few pictures of some visitors at our booth as well as some new studies and information.

Stony Brook Welcomes Rylie to the womens soccer program

The Stony Brook women's soccer team welcomed its newest member on Friday afternoon with the signing of five year-old Rylie Laber from Seldon, New York. Visit Link to Full Story

SDSF – Approved CFC Charity

SDSF is now listed on the CFC (Combined Federal Campaign) Charity List for the 2016 campaign. Federal employees and members of the military will be receiving a list of all the eligible charities very soon and be encouraged to donate to the charities of their choice. SDSF is listed in the 2016 national/international independent agencies under the number 10799. Please share this information with any of your friends or relatives who are federal employees and ask them to consider making a donation to SDSF through the CFC.

Camp Sunshine 2016

During July 10-15, an outstanding 47 Shwachman Diamond Syndrome families from across the US and Canada had the opportunity to learn, laugh, and make connections at Camp Sunshine in Casco, Maine. For the week, parents and SDS adult patients listened to medical presentations from physicians who specialize in Hematology, Health/ Psychology, Genetics, Gastroenterology, Endocrinology, and more! During the presentations, the children enjoyed arts and crafts and fun time with their amazing camp counselors. Families also enjoyed down time with sand volleyball, the indoor pool, Lake Sebago, mini golf, and other campus activities. The Shwachman Diamond ...

8th International Congress–Pictures and Presentation Abstracts

8th International Congress on Shwachman-Diamond Syndrome, Verona, Italy: Selected Hematology Abstracts of Interest to Patients and Families - Johnson M. Liu, MD Johnson M. Liu Patients with SDS demonstrate varying degrees of bone marrow failure, including isolated neutropenia, mild to moderate thrombocytopenia, anemia, and/or pancytopenia. Neutropenia is the most common hematologic finding, whereas anemia and thrombocytopenia are reported less frequently. The ...

6th Annual Tough Mudder a Huge Success!

On Saturday, May 21st I completed the 6th annual Tough Mudder run for Sarah Kilby (my daughter). This year I chose to run the Philly event, which is held 10 minutes from where I grew up, and attracted 7,000 participants over the weekend. Two good friends, Tommy Taylor and William Lawless were great teammates on Team Sarah. The course was a 10.5 mile trek filled with over 20 physically and mentally challenging obstacles. It was an amazing 4 hours. The start is always very emotional for me as I pluck my SDSF red bracelet and think of Sarah. Knowing what she has endured, and most likely will have to go through in ...