Every fall NTSAD hosts this special fundraiser in the Boston area to benefit its programs and support services. It represents that we all can imagine a day when these diseases can be treated, and in order to get there we must believe we can do it.
Royal Sonesta Hotel
40 Edwin Land Blvd.
This year we have the great pleasure of honoring Karen Aiach, Founder and CEO of Lysogene. Karen personifies a “don’t give up” attitude. Her daughter, Ornella, has Sanfilippo Type A. With her daughter’s health and life at stake, her passion, determination, and resourcefulness made gene therapy treatment available for her. And now she leads an organization that has made advances toward making treatments available for other children. We honor Karen as a mother and an entrepreneur. NTSAD shares and supports Karen’s interest in advancing gene therapy for GM-1 gangliosidosis.
This event is not a NORD sponsored event. This event is being hosted by a NORD member organization.