Smith-Kingsmore Syndrome Foundation

05/10/2026

Happy Mother's Day to all the moms/mums, bonus moms, grandmas, aunties and all the women in the village it takes to raise a child.

And very special thoughts to those moms who have lost their precious babies - you're in our hearts today 🩷

04/30/2026

We are incredibly grateful to the families, researchers, and advocates who came together to make this year’s Smith-Kingsmore Syndrome conference so meaningful. Your willingness to share your stories, your expertise, and your passion continues to move this community forward.
Together, we are building knowledge, strengthening connections, and creating hope for the future of SKS. Thank you for being part of this journey 💙

04/05/2026

🩷🧡💛Happy Easter! 💛🧡🩷

04/02/2026

🩷 Today is World Autism Awareness Day 🩷

Over 40% of individuals in our SKS patient registry have an autism diagnosis. Some individuals with SKS have common autistic traits (such as challenges with communication and social interaction, repetitive behaviors, heightened sensory sensitivities) but do not have an official autism diagnosis.

An autism diagnosis can facilitate access to developmental specialists, occupational therapists and speech therapists. It is worth advocating for an assessment with your clinical team if you have not had one.

Our SKS Family & Medical Practitioner guide outlines common features of SKS and can be used to help educate clinicians, teachers and therapists about the varied impacts of SKS:
https://smithkingsmore.org/family-medical-provider-guide/

03/08/2026

International Women’s Day!
Here’s to the women who lead, advocate, care, and inspire every day!

02/28/2026

🩷 February 28th is Rare Disease Day!

Learn more about Smith-Kingsmore Syndrome (available in 20+ languages): https://www.smithkingsmore.org/

Access our family guides in more than 20 languages: https://smithkingsmore.org/family-medical-provider-guide/

Donate to drive research for treatments and a cure: https://smithkingsmore.networkforgood.com/

02/24/2026

💛 Ramadan Mubarak to our community across the world - may this month bring you peace and blessings💛

02/11/2026

Registration is open for our SKS Family & Research Conference, April 24-26, Lurie Hospital, Chicago! Come hang with your community and hear from clinicians and researchers with SKS experience.

Head to our Family & Friends private FB page or DM us for registration links:
https://www.facebook.com/groups/3080229768726097

01/27/2026

Hello! Sharing a t-shirt sale fundraiser from Cincinnati Children's. Proceeds help fund future Rare Disease Day advocacy and programming at Cincinnati Children’s Hospital. Very cool t-shirts. Ordering is ONLY OPEN until Feb 1.

Online ordering for Cincinnati Rare Disease Day Fundraiser 2026

01/08/2026

Registration is now open for our fourth SKS Family and Research conference, Friday April 24th - Sunday April 26th!

Please visit our private SKS Friends and Family page for registration details - https://www.facebook.com/groups/3080229768726097