"It was a true pleasure representing SDSF at the ASH Conference. Christine, Pam, Carol Kolar and I spent many hours talking to physicians and researchers from numerous countries. We discovered SDS patients in many countries, including India, Venezuela, Russia and China and others. We also were able to attend some oral presentation relevant to SDS as well as view several poster presentations. We’re happy to report that there were more presentations and information shared about SDS at this year’s conference than at any previous ASH conference." --Joan Mowery, ...
Giving Tuesday, observed on the Tuesday following Thanksgiving (11.28.2017), takes the focus off of the commercialism of Black Friday and Cyber Monday and instead celebrates giving back. Why not give back to the Shwachman Diamond Syndrome Foundation to help fund research for a cure? On #GivingTuesday Facebook and the Bill & Melinda Gates Foundation are matching up to $2 million of funds raised on Facebook for U.S. nonprofits and Facebook is also waiving all fees for donations made to nonprofits on Facebook. Make your facebook donation on 11.28.2017.
It is SUPER EASY to fundraise on facebook! You can add a "donate" button to a post to show your friends that you're raising money for the Shwachman Diamond Syndrome Foundation. Or, you can create a "fundraiser" on facebook to celebrate a birthday, anniversary, or other events. This is such an easy way to share your family's story, get people talking about SDS to raise awareness and to ultimately fund a cure!!! To add a donate button to your post: Click What's on your mind? on your News Feed. Type a message to encourage your facebook friends to ...
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.