Category: Articles/In the News

Natural History Study

January 29, 2024

UPDATE: Study is closed to new participants.  Original update: The UCLA Department of Human Genetics is now completing the data gathering phase of a genetic study on individuals with overgrowth conditions,...

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Inaugural Family Conference!

January 29, 2024

Researchers and clinicians met with our families at Cincinnati Children’s Hospital Medical Center to study the condition. For more information on this conference and for links to the presentations, check...

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CCHMC Medical History Study

January 29, 2024

Cincinnati Children’s Hospital Medical Center (CCHMC) is working on a Medical History Study. If you are interested in participating, please email Lindsey Aschbacher-Smith at CCHMC for more information.   Email CCHMC

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Awareness Day

January 29, 2024

August 15, 2020, marked our first-ever Smith-Kingsmore Syndrome Awareness Day. Friends and families joined in a day to remember our blessings and bring attention to our struggles. We were reminded...

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Funding for Research

January 29, 2024

In just 5 weeks, together we raised $59,000, enough to fund a postdoctoral researcher for one year. Thank you!! Read more about the groundbreaking SKS research we are supporting.  ...

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SCRI Brain Research

January 29, 2024

Dr. Mirzaa at Seattle Children’s Research Institute (SCRI) is currently enrolling individuals with SKS who have had an MRI. The goal of this research is to understand the causes, mechanisms and...

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CoRDS Cast: Episode 28

January 29, 2024

We were thrilled to participate on this month’s episode of “CoRDS Cast,” a podcast highlighting a different rare condition on each episode. Tune in to hear Dr. Carlos Prada (Cincinnati...

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Blue Signal Gives Back

January 29, 2024

Blue Signal gave back (again)! Ryan Walsh won a whopping $3,986.50 to donate to the Smith-Kingsmore Syndrome Foundation on his behalf – all thanks to the combined efforts of the Blue...

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New SKS Research Published!

January 29, 2024

We are so incredibly thankful for researchers who partner with the Smith-Kingsmore Syndrome Foundation and SKS families around the world to advance the understanding of SKS and get us closer...

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With One Phone Call, Answers to a Genetic Mystery

January 29, 2024

Check out the University of Florida Foundation article by Liesl O’Dell on SKS and UF’s research team!   Read a story

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