We’re ALL IN to fund research! Are you?

Are you ALL IN? We need your help to raise an additional $100,000. Shwachman-Diamond Syndrome Foundation and the Shwachman Diamond Project are proud to announce that we have joined forces to fund a research grant. This grant is given to Professor Alan Warren at Cambridge University, in the amount of $100,000.00. Dr. Warren is creating a drug that will have a significant impact to improve the future of all SDS patients. We are going ALL IN to bring this drug to reality. We need your help to raise an additional $100,000. Will you go ALL IN? https://shwachman-diamond.org/all-in/

Heartwarming We Are Batman Stop-Motion Video Might Just Bring a Tear to Your Eye

The Make-A-Wish organization, Reckless Abandonment Pictures and 12-year-old Booker team up for a tear-jerking Batman stop-motion short. https://www.youtube.com/embed/lpSP73haq3k Click here to read the full article.

SDS International Scientific Congress – Dates Announced

The dates for the 10th SDS International Scientific Congress have been announced. The Congress will be held April 19 - 22, 2022 in Cambridge, UK. For more information, visit https://www.sdscongresscambridge.com.

SDS Awareness Ribbons – Order Now

A limited amount of our SDS Awareness ribbons are still available! These ribbons are custom-made, double-layer ribbons to bring awareness to SDS. Each ribbon will arrive assembled with a gold pin attaching them. Ribbons will be $5 per ribbon or 3 ribbons for $12. Domestic shipping is included. There is only a limited quantity of these - act fast! These are great to spread awareness, If you have a photo of you wearing yours, please share it and tag us or use the hashtags #cureSDS or #SDSStrong Fill out the form below to place your order.https://forms.gle/GdW3qvR86MbuXrN49

We Need Your Input – Complete Survey

We want your input—regardless of where you live and if your child is clinically or genetically diagnosed. We want to hear from YOU. And we’ll let you know the results of the survey. Survey https://forms.gle/5yNuWvKEt6hqrnQp9

Pallamallawa boy Max Hyles is one of the faces of the 2020 Jeans for Genes Day campaign

[July 21, 2020 - Austrailia] Max, who is 3 years old, is one of the faces of the 2020 Jeans for Genes Day campaign. Three months of testing eventually revealed that Max had a rare condition impacting his pancreas - Shwachman-Diamond syndrome. Click here to read the full article.

Online Survey – Rare Families/COVID-19

SDS Families-- Please complete this online survey! https://www.rarediseasesnetwork.org/covidstudy The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

Camp Sunshine 2020 Cancelled

It is with deep regret that we inform you that, out of an abundance of caution, we have cancelled our wee at Camp Sunshine in July. We feel this is necessary in order to protect our SDS patients during this health crisis. We are working with Camp to secure a week for next summer. Please stay healthy!

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 you will be given the research results and guidance to deal with them if ...