BLUEBELL, Pennsylvania - Contributing to this article is Nicole and Melanie Mendez-Villarrubia, two iCAN Youth Members, KIDS Illinois chapter, located at Ann & Robert H. Lurie Children's Hospital of Chicago, who, along with their mother Josie, all live with Marfan Syndrome – a genetic disorder of the connective tissue.
Recently, iCAN participated in the collaboration of PRA Health Sciences wonderful 'World Children's Day' event, led by Kirsten Sherman Cervatti, Sr. Director, Center for Pediatric Clinical Development. During this special day, it was recognized that children have the right to safe and effective pediatric medicines and treatments. iCAN was invited to send two young people to share their story of living with chronic, rare, and complicated diagnosis as well as, to discuss their personal experiences of participating in clinical research. Along with representatives from iCAN, expert speakers from UNICEF, Jumo Health, CISCRP, LSU-Shreveport, and SPROUTEL presented their own positive support for ensuring the highest quality of care for children throughout pediatric medicine and within clinical research.
In addition to battling Marfan Syndrone, these three courageous women have become vocal advocates for the rights of young patients around the world, that are also living with complex and challenging diagnoses. They continually fight for their perspective to be heard and their concerns to be addressed throughout the clinical trial process. During their speaking session at PRA Health Sciences, attendees were able to gain valuable insight to the needs of pediatric patients and their families.
From Nicole and Melanie's viewpoint, "iCAN empowers children and young adults to use their voice to make a difference, and it feels amazing to be a part of that! Thanks to PRA Health Sciences and iCAN, we had the pleasure of participating in World Children’s Day on November 20th, 2019. Both of us
were able to share our experiences as patient advocates and clinical trial participants, highlighting our hopes for the future. Growing up with a rare disease, Marfan Syndrome, presented many challenges. However, it also gave us the opportunity to participate in research that could improve our quality of life and that of others. We emphasized the importance of communication with patients during clinical trials and the power of their voice. It was incredibly meaningful to be surrounded by people making an impact in their own way, who saw the value in what we had to say. It is crucial that all of us continue elevating the patient perspective and forming authentic relationships; we must look past the data and treasure the human connections that allow research to move forward. Children, in particular, are often underestimated when they have so much to offer. Let’s keep making an impact with them, for them."