Little Giants Foundation

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Year Founded:
2014
Local Leader / Exec. Director:
Erin Koesters
Main Address:
15603 South Highway 6
Gretna, NE 68028
Midlands Community Foundation
217 N. Jefferson Street
Papillion, NE 68046
Event:

GIVINGTUESDAY402

GIVINGTUESDAY is a great day to give and did you know you can schedule your donations by using code: GIVINGTUESDAY ahead of time?
So what does your donation do to help Little Giants?
SIOD is a very difficult disease to diagnose. There may be many more children that are affected since the life expectancy is only nine years old. Dr. David Lewis at Stanford has received our documentation on families I have personally talked to over the past 12 years during Emily's diagnosis and wants to hire a staff person to keep registry and have a biorepository available. As not only Executive Director of Little Giants, but as a mom of a SIOD child I would work closely with the Stanford team and current and new families to help ease them into this medical world.
From Dr. Lewis: "This will include carrying out whole genome sequencing, a form of RNA-Seq (Cite-Seq), and proteomic studies in addition to extensive immunophenotyping. We already have three SIOD patients to study with these features and believe that this work will greatly help our understanding of how graded decreases in SMARCAL1 gene function may lead to selective disease features. These patients and materials from them may be particularly helpful in screening for drugs and other approaches, such as using CRISPR technology, to prevent progression or even reverse disease pathology in SIOD.
The cost for such studies will be about $50,000 as many of these assays require relatively expensive technology, particularly the Cite-Seq.

Event Type: 

FUNDraising

Where: 

15603 S Hwy 6
Gretna, NE 68028
United States

When: 

December 1, 2020