Who are we?
We are a nonprofit organization providing Community, Advocacy, Research, Education, and Support for Ogden Syndrome.
Ogden Syndrome and Genetic Facts
Our bodies are made up of cells. Within each cell is a nucleus. Within each nucleus there are 23 pairs of chromosomes (you get one from mom and one from dad!).
Ogden Syndrome is caused by a single spelling error on the crucial NAA10 gene.
Ogden Syndrome is Ultra Rare! So rare in fact the odds of diagnosis are 1/11 MILLION
The NAA10 gene is located on the X chromosome at position Xq28.
The NAA10 protein is made and generally remains in the cytosol.
The entire NAA10 gene is almost 6000 nucleotide bases long!
Ogden C.A.R.E.S. has officially partnered with Rarebase in an effort to identify an already FDA-approved medication that will benefit our loved ones living with Ogden Syndrome!
To be taking the first pre-clinical steps on the hunt for a treatment option for this community is a dream come true, and it took a lot of hard work and a collective effort to get here. We are especially grateful to Jody Smith, President and Owner of CornerStone Staffing, for her extremely generous donations, without which this dream would still be years away.
Brinley is 4 years old and lives in Texas with her parents, Todd and Kelly; her older sister, Jayla; and her twin brother, Wesley.
Kamilla is 7 years old and lives in Texas with her parents, Stefanie and Johnny, and her sisters, Kinzley and Evelyn.
Amelia (Millie) is 2 years old and lives in Washington State with her parents, Nikki and Gerrad, and her baby brother, Calvin.