This week we were so lucky to have Saratoga Springs, NY photographer Tracey Buyce volunteer her time to do a photo shoot with Esmé for The Cute Syndrome and our partners at TinySuperheroes. The photos are just stupendous. Tracey truly captured Esmé's spirit and her life. Take a peek here.
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TCS's partners Insieme per la Ricerca PCDH19 (Together for PCDH19 Research) held their second annual PCDH19 World Conference. TCS was very pleased to attend this important event this year where we learned so much about the current research into PCDH19 happening around the world. We heard papers from leading researchers around the world at the conference and had the tremendous opportunity to speak with many of them at length about the future of PCDH19 research, potential collaborative efforts in gathering data about this disorder, and how best to maximize our results in granting funds. You can read more about the conference speakers and their papers here.
We are so grateful for the hard work our partners did to bring all of these researchers together to help our girls! We are so very proud that the hard work of our partner organization in Italy, Insieme per la ricerca PCDH19 - ONLUS, has contributed an upcoming drug trial by Marinus Pharma with a new medication: ganaxolone. This trial is the direct result of Insieme per la Ricerca PCDH19's funding of research over two years and their persistence in organizing the medical, research, and pharmaceutical community. We are so grateful for their work.
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