Welcome to our first podcast! Ignore the sound issues...we can only go up from here! But it will be hard to beat my first guest, Cynthia Lang.
Cynthia is a mom to a son that was recently diagnosed with Skraban-Deardorff and we had a great conversation about what the diagnoses has meant for her family and how it has set her on a path to find a treatment for this rare disease. She has partnered with a company called Rarebase (rarebase.org) that is leveraging cutting edge technology to potentially help all the kids diagnosed with Skraban-Deardorff Syndrome.
If you are interested in participating in the Rarebase research, please visit their website or reach out to me at SmilesIncludedPodcast@gmail.com and I can share a document from Cynthia.
Other allies in the genetic research fight mentioned in this podcast are:
National Organization for Rare Disorders (rarediseases.org)
Global Genes (globalgenes.org)
Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.