66 results for author: Jenni Wachter


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 donated to SDSF.  

SDSF New Board Member

Shwachman-Diamond Syndrome Foundation has the pleasure of introducing our newest Board Member, Nicole Shen. We are looking forward to working with her and welcome her to our SDS family.

Check out our Videos Page

We now have a "Videos" page of our website that SDS patients and families can use as a resource. Currently, we have two videos on our website and more will be posted soon! We plan to have videos of the medical presentations from Camp Sunshine 2014 provided for you! Come back to check these awesome videos.

Two Research Grants Awarded

Shwachman-Diamond Syndrome Foundation is proud to announce the awarding of two (2) grant proposals for funding this year. Recipients of these grants are Allison Bertuch, MD PhD, for her research titled "Why are Shwachman-Diamond syndrome cells hypersensitive to y-irradiation?" and Seth Corey, MD, for his proposal titled "Identification of cooperating genes in the transformation of SDS to MDS/ AML in the zebrafish model that phenocopies human SDS". Both of these grants are being supported by a donation from the Shwachman Diamond Project.

Tough Mudder Run a Success

Dan Kilby and his team, "We Mudd For Sarah," finished their 5th Annual Tough Mudder Run. They did such a great job raising money and awareness of SDS for SDSF. The team raised more than $12,500 for SDSF! We appreciate all of your dedication and support. Dear Family and Friends, We did it!!!! Team Sarah conquered another Tough Mudder run this past Saturday. It was an epic day on a beautiful mountain. I want to first thank Team Sarah, an amazing group of friends. Cures. Opportunity. Love. Relief. Peace. Safety. Dreams. Life. These things are possible when friends and family like you help with your donations. Because of you we raised almost ...

8th International Congress Dates Announced

The dates for the 8th International Congress on Shwachman-Diamond Syndrome have been announced; April 17-20, 2016. SDSF is an important sponsor for this meeting. Our funds help bring experts, researchers, and clinicians together to present and discuss research findings, treatment, and care of patients with SDS. Please continue to support SDSF so we can support the Congress and research for patients of SDS. Visit Site

8-year-old’s wish to join the Army is granted

8-year-old’s wish to join the Army is granted Visit Link to Story

Rare-disorders advocates combine forces at Capitol Confidential

Rare-disorders advocates combine forces at Capitol Confidential Visit Link to Story

Communities come together for sick child, Natalie, with SDS.

Communities come together for sick child, Natalie, with SDS. Visit Link to Story

Newest Colorado basketball member, Cason Turkaly, age 5, and inspiration.

Newest Colorado basketball member, Cason Turkaly, age 5, and inspiration. Visit Link to Story

Affiliations

Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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