VASCULAR BIRTHMARKS

Research & Support

In 2009, TBOF launched the Touched by Olivia Vascular Birthmarks Clinical and Research Fellowship through Sydney Children’s Hospital.  Through this Fellowship, Touched by Olivia is committed to funding 2 key dedicated experts for 3 years, including a paediatric dermatologist and researcher. This Fellowship aims to position the Hospital as a global centre of excellence in Vascular Birthmarks by publishing up to date information and connecting families whose children suffer from a vascular anomaly.  With a commitment by the Foundation of more than $700,000 over the past 4 years, this Fellowship will most definitely help save lives.

Why is this Fellowship important?  Vascular Birthmarks represent a group of diseases that, sadly and for reasons unknown, seem to be affecting more children each year.   Until recent years there has been limited research into Vascular Birthmarks, which vary from the more common lesions such as infantile haemangiomas (the common birthmark) affecting 1 in 10 children, to some of the rarest such as lymphangiomas, which can be life threatening to infants if located near a vital structure such as the airway.  In Olivia’s case, the lymphangioma proved fatal.

We believe this project can achieve four key outcomes:

1. Families, globally, will have access to complete and full information.

We will achieve this by enabling the access of medical articles, research and expertise to be easily accessible via our website.  This will, in time, include access to the world’s largest known database of information pertaining to sufferers of Vascular Birthmarks that is currently being compiled by the dedicated Fellow adopting methodical and uniform qualitative and quantitative criteria.

2. Families, globally, have access to the medical experts, wherever they are located.

This is a dedicated aspect of the support network referred to in outcome 2 above.  It will ensure that families, no matter where they are located, can access the most current and qualified expertise and be afforded the opportunity to benefit from the most advanced treatment and management options.

3. Maybe, one day, even find a cure.

There is hope that through consolidating case studies from around the world in a more consistent and methodical manner, utilising consistent qualitative and quantitative criteria, patterns will emerge resulting in breakthroughs in diagnosis and treatment of Vascular Birthmarks.