NZ LAM Trust Director Bronwyn Gray and NZ LAM Trustee Dr Hetty Rodenburg attended the annual American LAM Conference, held in early April in Cincinnati Ohio.
This year’s medical/scientific and patient and family meeting was the largest yet with over 100 doctors, scientists and investigators from the USA, Canada, Great Britain, France, Switzerland, Germany, Spain, Ireland, Peru, Thailand and New Zealand attending the scientific sessions and presentations over three days.
LAM patients and members of their families spent valuable time in patient oriented support sessions and patient education sessions.
Dr Rodenburg addressed the opening session of the meeting as keynote speaker and facilitated patient workshops throughout the weekend; she was also a guest speaker to medical students and medical staff at the University of Cincinnati School of Medicine. Hetty’s expertise and experience as a Kubler Ross Counsellor and as a General Practitioner dealing in Loss and Grief in chronic life threatening illness, was hugely welcomed at the meeting.
Basic and Clinical Science sessions were wide ranging and included presentations on new insights into the pathology of LAM, highlighting new research on the cellular and genetic basis of smooth muscle proliferation in the disease.
There was a feeling of hope and optimism about the new cutting edge research in the USA and around the world and the New Zealand LAM Trust is among LAM organisations in 6 countries lobbying for funding for the setting up of an international patient data base focussing on the number of women around the world suffering from the disease.