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 ...

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 ...

Shop Amazon Smile for Father’s Day

Father's Day is Sunday, June 19. Remember to shop smile.amazon.com and Amazon will donate to Shwachman Diamond Syndrome Foundation Inc. Click the image below to browse Father's Day gift ideas!

Mother gives gift of life to ailing son

For Honey Denson, the best Mother's Day gift isn't going to be one she's getting, but one she's giving. Her 10-year-old son, Luke Denson, needs a bone marrow transplant, and she's a match.... Visit Link to Full Story

Kilby Family Plans to Raise $15,000 for SDSF

Dan Kilby, father of SDS-patient, Sarah, plans to once again fundraise and participate in a Tough Mudder, a 10-12 mile mud and obstacle course designed to drag you out of your comfort zone by testing your physical strength, stamina, and mental grit. He and his team will participate in the Philly Tough Mudder on May 21, 2016. To support Dan and his team, he is asking for donations from friends and family to help raise money for Shwachman-Diamond Syndrome research in his daughter, Sarah’s, name. Donations will go directly to the Shwachman-Diamond Syndrome Foundation ...

Support SDSF for Rare Disease Day with a T-SHIRT

In a Superman movie, Superman was asked what the "S" stood for on his logo and his response was, "It's not an S, on my world it means 'hope'." For Shwachman Diamond Syndrome families, SDSF's blood drop "S" is like hope for us in that the Foundation supports families, improved treatment and research for a CURE! Adult and Children's Sizes Available Visit https://www.booster.com/sdsf to view all of the t-shirt colors, sizes and to buy yours now! Buy a shirt, spread awareness to support families, ...

Help Spread the Word about Our Rare Disease Day Fundraising Challenge

In honor of Rare Disease Day on February 29, 2016, 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 $5000 before February 29, 2016. So far, we’ve raised $0. We need to raise $5000 more to reach our $5000 goal. Thank you very much for your generous donation! Help us spread the word about our Rare Disease Day Fundraising Challenge by sharing via social media and/or email.

Camp Sunshine 2016 Dates Announced

MARK YOUR CALENDAR - SDS week at Camp Sunshine this summer is July 10th to 15th. Watch the Camp Sunshine website as the SDS week applications will be posted very soon.