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.

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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.

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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!

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Coronavirus – A letter to families

SDSF - A letter to families about COVID-19Download

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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.

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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 ...

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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 ...

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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

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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 ...

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July Fundraising – Flamingo Flocking

Start your own Flocking Fundraiser to support SDSF and raise awareness for our rare disease. Contact Michelle at michelle@shwachman-diamond.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 ...

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