CaRAVAN was founded by a mom whose child, Michael at age 6 was diagnosed with a vascular anomaly called Kaposiform Lymphangiomatosis (KLA). Ultra-rare, life-threatening with no cures, the journey to save Michael has been daunting, frightening, circuitous, and isolating.
While grateful to have a medical background and serving on faculty as an Associate Professor of Surgery for over fourteen years at one of the top academic medical institutions in the country, this life changing experience has made a huge impact with respect to having to navigate the healthcare system as a mom through the eyes of a clinician-scientist. It was unimaginable to consider how moms, dads, families, care givers and patients who do not have the benefit of having a medical background cope and manage.
Some of us have found support, advocacy and education through our hard-working patient advocacy organizations or community groups. And while new discoveries are on the horizon and we believe cures are within reach, currently research driven initiatives are inhibited by the lack of resources available including lack of experts in the field and funding for research.
Our work intends to serve everyone in the vascular anomalies community. We strive to be of value to all those engaged in all research efforts from concept and study design to standards of care with the implementation of new, safe, and effective therapies.