SDS Congress Canceled
We are sad to report that the SDS Congress in Cambridge, England is canceled due to Coronavirus concerns. It will hopefully be rescheduled in April 2021.
Exciting New Research Study
Medical literature and research studies have shown that the incidence of diabetes is higher in SDS patients than in the general population. It is important to determine if SDS patients are at risk for developing diabetes. Early diagnosis and treatment are essential to avoid the complications that diabetes can cause. If you are a genetically confirmed SDS patient 3-year-old or above, PLEASE join this study. SDS patients who have already been diagnosed with diabetes are also asked to participate. This study is free, it will require no travel. And perhaps best of all ...
SDSF Holiday Snowflake Ornament
SDSF is excited to announce that we have created an ornament for the holidays! It can be hung on your tree, on a Menorah, in a window or simply displayed on a hook. Our hope for this project is to spread awareness and support while raising funds to help find a cure. Our goal is to create a newly designed ornament each year. Each ornament is $12.50 (free shipping) with proceeds going directly to the Shwachman Diamond Syndrome Foundation. Purchase more and save more! Purchase 5 ornaments for $57.50 (saving $5) or purchase 10 ornaments for $115.00 (saving ...
2020 Camp Sunshine Dates Announced!
Save the date! Camp Sunshine dates have been announced for next summer! July 12-17, 2020 Learn more about Camp Sunshine here. The link below takes you to the application page. https://www.campsunshine.org/programs/applications
August Fundraising – Sporting Tournaments
Welcome, August! For some of us, there is still another month of summer while others are already heading back to school. Now is the perfect time to come together with your favorite community/school sports teams and start a fundraising tournament. Summer/Fall is a great time to get out there and be active, involve your community, and show your sportsmanship for team SDSF! Some great ideas consist of bowl-a-thons, homerun derby's, chess matches, slapshot competitions, hoop contests, soccer and golf tournaments. If you're not a sports fan, choose your favorite club to ...
July Fundraising – Flamingo Flocking
Start your own Flocking Fundraiser to support SDSF and raise awareness for our rare disease. Contact Michelle at firstname.lastname@example.org if interested. When you have a rare disease you have to make a pretty big noise to get awareness and fundraising. More common diseases have months, days, dedicated teams to fundraising, etc. Being rare, it means a lot of those duties get assigned to parents just like us. My son is 5 years old and has been living with SDS since he was born. We have had to make some pretty big noise just to have doctors hear us, which means we ...
SDS Family Day Details
The Shwachman-Diamond Syndrome Registry (SDS Registry) is hosting the 2019 SDS Registry Conference, in Boston, MA. The Registry would like to share exciting new advances in their understanding of SDS made possible by the participation of everyone enrolled in the Registry. The SDS Registry welcomes you to this meeting to learn more about ongoing research, clinical trials, and treatments for SDS. ORGANIZERS:Akiko Shimamura, MD, PhD and Kasiani Myers, MD DATE:Sunday, September 15, 2019. VENUE: Harvard Medical School Joseph B Martin Center77 Avenue Louis ...
May Fundraising – Spring into Fundraising
It's SPRING-time and everyone wants to enjoy the outdoors! What a perfect time to have FUN hosting an outdoor fundraiser for Shwachman-Diamond Syndrome Foundation. Let's "Spring" into Fundraising! Now that the weather is nice, start a new fundraiser! Host a plant sale, car wash, or garage sale. Take on a part-time gig of walking dogs or mowing lawns. Any proceeds can be donated to SDSF! Join us to raise awareness and help FUND a cure!
SDS Family Day – 9/15/19
The Shwachman-Diamond Syndrome Registry invites SDS families to a complementary day of education, connection, and fun! See the flyer for more information! SDS Family Day PDF FlyerDownload
SDS – Rare Disease Infographic
The SDSF is proud to present an infographic that helps explain facts about Rare Diseases and Shwachman Diamond Syndrome! What a wonderful resource to help raise awareness about SDS on Rare Disease Day (February 28). This document will be a great conversation-starter that you can distribute to family, friends, classmates, coworkers, etc. Post on social media and help us spread awareness! DOWNLOAD AS A PDF