Help Us Find a Cure

In the midst of preparing for the busy holiday season, we realize that you are likely being asked to make end of year donations to multiple organizations.  In the spirit of giving, we kindly ask for you to consider the Shwachman-Diamond Syndrome Foundation (SDSF).
As many of you are aware, we have lost two of our precious children this week alone. We must do what is necessary to save other children. We can only do this by funding research to find a cure for SDS.  And bluntly, that takes money.

By providing grants to researchers, we afford the opportunity improve the quality of life for patients with the endeavor of a cure. SDSF is reliant on the generosity of our families and friends to continue the important work we do together.  We are currently funding three research projects.
In addition to these efforts, we financially support the International SDS Scientific Congress, attend and exhibit at medical conferences, provide support to families, and sponsor SDS family conferences.
Please help us continue our ongoing fight against SDS by making a donation through our website:
and clicking on the DONATION icon.  Make your donation in honor or memory of your SDS loved one. If you are able, please join us and select the option to become a member of our " Monthly Donors Club."

In addition to the above, please consider the following options:

If employer participates in the United Way and/or the Federal Employees Giving Program , request SDSF be designated as your charity of choice.
Opt to use while completing your online holiday shopping.  By entering "SDSF," 0.5% of eligible purchases will be donated.
Thank you for your consideration and continued support.

Ongoing Fundraisers

SDSF would like to encourage everyone to raise funds to support research and the Foundation. We have had families raise money through letter writing campaigns, school dances, corporate matching gifts through their employers, golf tournaments, physical competition events, Super Bowl parties and more.
Shwachman-Diamond Syndrome Foundation
FOUNDER: Joan Mowery 1994


Christine James, President
Joan Mowery, Vice-President 
Pamela Miller, Secretary
Bryan Sample, Treasurer
Ed Bickel, Creative Media Chair
Christian Del RĂ©, Communications Chair
Stephanie Gregoretti, Fundraising
Jenni Wachter, Webmaster
Nicole Shen, Membership

Other Amazing Leaders

Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - Advisor to the Board
Ed Turkaly - Advisor to the Board
Kim McDowell - Administrative Assistant and Bookkeeper

ATTORNEY: Ann Bodewes Stephens, Herzog Crebs

Have an article, update, or fundraising activity you would like to share in a future newsletter?  Email your story to:

We would love to hear from you and share your stories!
Shwachman Diamond Syndrome Foundation