This is a simple fundraising idea for your place of employment, local businesses or even your child's school. Most people have heard of or participated in something like this before. Participants would get to dress down in exchange for a donation. 100% of donations go to the Shwachman Diamond Syndrome Foundation to support research and help find a CURE! Click to Download and Customize a "Casual for a Cure Flyer".
A family is organizing a bone-marrow registration drive in hopes of finding a match for their 6-year-old son, Wade, who needs a bone-marrow transplant. Visit Link to Story
The dates for the 9th International Congress on Shwachman-Diamond Syndrome have been announced.... APRIL 8-11, 2018 Texas Medical Center in Houston, Texas
“I’m hopeful that as more and more people in the local community learn that there is pediatric cancer research happening right here in Richmond, that they don’t have to send a check to St. Jude’s or St. Baldrick’s, they can actually donate to Connor’s Heroes and it goes right to research that’s happening here,” said Lisa Goodwin, the group’s executive director and Connor’s mom. Dr. Seth Corey and his team are able to manipulate the zebrafish genes so the fish have features similar to children with SDS.
Are you going to buy your sweetheart a Valentine's Day present? Why not buy it on smile.amazon.com and make SDSF your charity? That is really showing your love.
In honor of Rare Disease Day on February 28, 2017, 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 $3,000 before February 28, 2017. Help us spread the word about our Rare Disease Day Fundraising Challenge by sharing via social media and/or email.
Shwachmand Diamond Syndrome Foundation was at the ASH (American Society of Hematology) Annual Meeting in San Diego, CA December 3-6, 2016. Here are a few pictures of some visitors at our booth as well as some new studies and information.
The Stony Brook women's soccer team welcomed its newest member on Friday afternoon with the signing of five year-old Rylie Laber from Seldon, New York. Visit Link to Full Story
SDSF is now listed on the CFC (Combined Federal Campaign) Charity List for the 2016 campaign. Federal employees and members of the military will be receiving a list of all the eligible charities very soon and be encouraged to donate to the charities of their choice. SDSF is listed in the 2016 national/international independent agencies under the number 10799. Please share this information with any of your friends or relatives who are federal employees and ask them to consider making a donation to SDSF through the CFC.
During July 10-15, an outstanding 47 Shwachman Diamond Syndrome families from across the US and Canada had the opportunity to learn, laugh, and make connections at Camp Sunshine in Casco, Maine. For the week, parents and SDS adult patients listened to medical presentations from physicians who specialize in Hematology, Health/ Psychology, Genetics, Gastroenterology, Endocrinology, and more! During the presentations, the children enjoyed arts and crafts and fun time with their amazing camp counselors. Families also enjoyed down time with sand volleyball, the indoor pool, ...