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 ...

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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, ...

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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.

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Add or Update Patient Pictures to the SDSF Website

A new feature has been added to our website--an online form to make it easier for SDSF to collect the information required for patient pictures. If you want to add a picture of an SDS patient to our "Patient Pictures" page or edit/change the current picture, patient age, caption, or link to care page, please click the blue button on the top of the Patient Pictures page.

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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.

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UK woman honors her sister’s battle with SDS with a special tattoo

The tattoo means we will always be together' Grieving mum-of-two has sister's ashes inked into portrait on her back Visit Link to Story

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The gift of home during the holidays

Natalie Livengood will be home this Christmas thanks to Akron Children's Hospital. Visit Link to Story

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New Banners Created

As a way to showcase who and what we are, we decided to update our current banners. These banners will be displayed at medical conferences, family conferences, fundraisers, or any other event in which signage will add to our cause. A board member designed the three banners below and we had them printed by "A Big Difference Signs" from St. Louis. The first banner talks about the specifics of Shwachman Diamond Syndrome as a genetic syndrome. The second banner displays our logo and a wonderful collage of several patients living with SDS. Lastly, the third banner showcases ...

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Recent Research Articles Added to Site

If you haven't checked out the newest medical articles regarding Shwachman Diamond Syndrome published in 2015, we encourage you to do so. We added 21 new articles to our list of articles to our "Research Articles" page. To date, we now have a total of 383 research articles written about Shwachman Diamond Syndrome. That number is remarkable and we are very grateful for our wonderful doctors and researchers!

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Team Wade’s World supports SDSF at the “Be the Match” Walk+Run in St. Louis

On October 3, the "Wade's World" team supported Wade (a four year old SDS patient) and the Shwachman-Diamond Syndrome Foundation at the annual Be the Match Walk+Run in St. Louis. Wade's parents, Adam and Jenni, ran the 4-mile run in honor of Wade (with their best times, we might add). Joan Mowery, founder of SDSF, was also present at the Walk+Run event as she set up a table to showcase the Shwachman Diamond Syndrome Foundation within the exhibitor booths. Prior to the race, the team sold Wade's World t-shirts and collected donations to raise more than $2,000 to be ...

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