The MLD Foundation Family Conference was held in Melbourne on Saturday 19th March 2011 from 1.00pm till 8.00pm at Rydges Bell City Hotel and Conference Centre, 215 Bell Street, Preston. The attendance of 46 comprised ALDS families, committee and staff; MLD Foundation, Guest Speaker Professor John Hopwood and panellists – Melissa Heywood, Royal Children’s Hospital Palliative Care; Sarah Connolly, RCH Social Worker, Andrea Murphy, Very Special Kids; Christina Kelly, Make A Wish Foundation and Pam Joseph, ALDS Family Advocate. ALDS is very pleased to have been able to assist six families with the cost of transport and/or accommodation to the conference and we hope they all had a rewarding and informative time together.
For those who attended the conference and also for those who were not able to attend, conference notes will be available after a short while and will be sent out to all families. A video of the conference will also eventually be available.
Thanks are extended to Dean and Teryn Suhr from the MLD Foundation for the work and time they dedicated to the conference. We are pleased to have been able to work with Dean and Teryn to ensure a successful conference with as many ALDS families from around Australia as possible in attendance.
Diaglogue from one of our members - I was invited to attend the MLD Family Conference in Melbourne on the 19th March, where I met so many nice people and took home wonderful memories of love, laughter and inspirational stories. Many passed on practical tips and information which helped others with the myriad problems they encounter looking after a loved one with MLD.
On a personal level, I met Professor John Hopwood of the Lysosomal Diseases Research Unit at Adelaide Hospital. He wants to conduct tests to see if I actually have MLD or pseudo-MLD as I have one MLD gene and two pseudo-MLD genes. MLD (or any leukodystrophy for that matter) can be a lonely disease and John was willing to listen to me and offer practical help.
Many thanks to Bob Wyborn for putting my name forward and to Robyn Loh for organising transport, accommodation and meals at no cost to myself, and Pam Joseph for all her hard work. Thanks also to the many health professionals who gave up their Saturdays to meet and discuss issues important to the families who were there. Thanks must also go to parents and grandparents who shared their experiences with us.
Lastly, but most importantly, a huge thank you must go to Dean and Teryn Suhr from the US for their tireless efforts in educating health professionals and the world in general of the plight of people suffering from MLD and offering practical help and treatments available to the families of children and adults with MLD.