Check out the great videos from our Smith-Kingsmore Syndrome Facebook Live sessions and our SKS community.
Parent Panel
Live Parent Panel Interview
Smith-Kingsmore Syndrome Foundation interviewed three of our parents of children with SKS. Watch to hear about their typical day parenting a child with SKS, how they deal with the SKS digestion challenges, and other important issues. Thank you to these amazing parents for sharing!
Medical Topics of Interest
SKS Global Patient Registry with Alyssa Mendel
Smith-Kingsmore Syndrome Foundation talks with Alyssa Mendel, Clinical Research Specialist with Sanford CoRDS, about the SKS Global Patient Registry. Learn all about Sanford CoRDS and why we have partnered with them to create our registry! Alyssa explains how to get started on your own SKS Registry. We appreciate Alyssa for sharing her time and expertise with us!
Seizures Are Scary with Lyndsey Prange, MSN, CPNP
Smith-Kingsmore Syndrome Foundation spoke with Epilepsy Nurse Practitioner, Lyndsey Prange, from Duke Children’s Hospital. Lyndsey Prange, MSN, CPNP, talked about epilepsy, answered questions, and provided helpful advice and parenting tips. We are very thankful for her sharing her knowledge and supporting our families.
Let's Talk Sleep with Dr. David Smith
Smith-Kingsmore Syndrome Foundation talked with Dr. David Smith, MD, Ph.D. Dr. Smith spoke about sleep struggles including sleep hygiene, falling asleep and staying asleep. He offered advice for sleep-deprived parents, and where to find help when all else fails. We appreciate Dr. David Smith sharing his insights on sleep with us!
Dr. Laurie Smith Introduces Smith-Kingsmore Syndrome
For our first Smith-Kingsmore Syndrome Facebook Live event, who else but the amazing Dr. Laurie Smith, who first documented Smith-Kingsmore syndrome?! Dr. Smith spoke with SKS Foundation Director Dan Lepore, and answered questions from families about SKS. We appreciate Dr. Laurie Smith taking the time to speak with our families!
Ezra's Story
Thank you XVIII Airborne Corps for helping us share Ezra’s story!
Posted by the XVIII Airborne Corps:
“At the end of last week, we spoke with Col. Ricardo Ong of Army Medical Detachment to discuss Rare Disease Awareness Day, held at the end of February. We also visited Maj. Eric Kelly of 519th Expeditionary Military Intelligence Battalion, his wife Nazira, and their son Ezra, who was born with Smith-Kingsmore syndrome, a rare genetic disease. Their story, combined with an introduction to Fort Bragg’s pending genetics clinic under the direction of Col. Ong, brings to light the many challenges parents face in seeking care, as well as highlights Army #modernization and the resources available to assist with special needs.”
