Founders and team
Our team is made up of our parents. We are the most devoted to achieve our mission. All team members have the responsibility to oversee the organization’s development, participate collectively in decision making, and contribute to achieving our mission.
Daniele Ciampa
Daniele and his family live in Pisa, Italy. Daniele graduated from University of Pisa, with a degree in pharmaceutical science and administration, under Pharmacy. He currently works as a pharmacist in Pisa Italy. Since his daughter was born and diagnosed, it became his life purpose to help all kids with this rare disease and advocate for research. He is beyond dedicated to bring awareness and push research forward with the goal to find effective treatments and cure. Daniele is passionate about sports and loves soccer! In his free time he loves to spend time with his family, play with his daughter and see her smile.
Katrina Kershner,
Picture & Bio coming soon!
Scarlett Aber
Scarlett and her family live in Hillsboro, Ohio. She graduated from Hondros College of Nursing and is currently working as her daughter’s home health nurse. Since her daughter’s diagnosis, she has been advocating and raising awareness for rare diseases. Driven by the most profound love for her daughter, she is committed to helping find an effective treatment/cure for her daughter and all those affected by SMC1A. In her free time, Scarlett enjoys spending time with her family.
Piret Saagpakk
Piret has been a San Francisco, California native the past 25 years. She has a BA in Industrial Arts from SFSU. Her background is in graphic/web design and internet marketing but currently, she’s mostly her daughter’s full time caregiver. Advocating for kids with special needs gives Piret the biggest purpose and self-fulfillment in life. In her free time, she catches a Bikram class or enjoys a long run outdoors, her favorite trails are along the ocean. Piret has completed 1 half and 1 full marathon.
Medical Advisors
Our Medical Advisors role is to help us ensure valuable and appropriate data collection from our patient population, identify gaps in science that need filling inorder to progress towards our goals, and advise us on funding research proposals to ensure these are aligned with our vision and target our communities most critical needs, so that we can progress towards our Mission.
Joseph Shieh, MD, PhD. Medical Geneticist at UCSF
Dr. Shieh is board certified in Medical Genetics. He specializes in evaluating individuals with complex medical problems and management of rare genetic conditions. Dr. Shieh’s research laboratory aims to understand how X-chromosome genes are regulated and how to alter gene expression. He is the geneticist for children with rare conditions. He is an expert in genome biology and informatics. He serves as geneticist for a Center of Excellence at UCSF. He co-directs the UCSF Personalized Genomics Clinic. Recent work has focused on early detection of genetic conditions via newborn and family sequencing.
Matthew Deardorff, MD, PhD | Keck School of Medicine of USC
Dr. Deardorff’s work integrates patient information with genomics and cell biology to diagnosis and understand rare genetic disease. His research focuses on disorders caused by dysregulation of chromatin or altered translational regulation, specifically, Cornelia de Lange, Coffin-Siris, Skraban-Deardorff and KBG syndromes.
Dr. Kristin W. Baranano, MD, PhD I CHOP
Pediatric Neurology / General Child Neurology, Baltimore Children’s
Picture & Bio coming soon!
Partners and Members
