Ogden C.A.R.E.S.!

Who are we?

We are a nonprofit organization providing Community, Advocacy, Research, Education, and Support for Ogden Syndrome.

Ogden Syndrome and Genetic Facts

Latest Information

10 Around the Track Walk 'n' Roll

It’s time again for our all inclusive, virtual fundraiser for Ogden Syndrome! Last year with the support of our community around the World we were able to smash our goal of $10,000 and went on to raise over $16,000 for Ogden Syndrome research! 

This year we are shooting for the stars with an ambitious goal of $25,000 to get us one step closer to a treatment option for Ogden Syndrome!!!

It’s as Easy as 1,2,3!

1) From now until October 5th Create or Join a Team to support! You can see Teams that have already been created on a leaderboard at the bottom of the linked page! 

2) Promote and encourage others to participate and give!

3) Walk, Run or Roll 10 Laps around the Track nearest you anytime between October 5th and October 15th 2023 in honor of Ogden Syndrome! Be sure to use #ogdensyndromewalknroll23 or tag Ogden CARES in your photos so we can follow along on your unique Walk ‘n’ Roll!

Together we can make a huge difference!

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.

Spotlight Series


Brinley is 4 years old and lives in Texas with her parents, Todd and Kelly; her older sister, Jayla; and her twin brother, Wesley.

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Kamilla is 7 years old and lives in Texas with her parents, Stefanie and Johnny, and her sisters, Kinzley and Evelyn.

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Amelia (Millie) is 2 years old and lives in Washington State with her parents, Nikki and Gerrad, and her baby brother, Calvin.

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A Global View of Ogden Syndrome