Amy L. Marini RN, BSN, CHTP

Amy has been a registered nurse focused on pediatric nursing for more than 25 years.  Her passion to help children has been lifelong.  Amy’s clinical experience led her to the role of clinical education specialist at the largest pediatric rehabilitation facility in the country for 13 years – which in turn has helped her prepare for the most important nursing role yet: mom of three, two of whom have Cockayne syndrome.  Since the diagnosis of her children in 2015 she has focused on creating awareness and education for Cockayne syndrome and strives to help other families understand the complexities of the diagnosis so they can, in turn, advocate for, and help their children, as much as possible.

Amy has her Bachelor’s in Nursing from William Paterson University and is also a Certified Healing Touch Practitioner.