Welcome to the first LRRO newsletter
As this is the first of many Newsletters I thought it appropriate to explain a little of the history of how I became linked to Leukodystrophy. On the 10th of November 1997 my 9-year-old son Brendan was finally and correctly diagnosed with Adrenoleukodystrophy (ALD). This came almost two years after his mum had been constantly reporting to different doctors that she believed he was “not quite right as his normal behaviour and schooling was being adversely affected”. As she anxiously sought answers she only received edicts that there was nothing wrong with him, it could be poor parenting or a lack of discipline and other exclamations covering their ignorance displayed in not listening to the very person who knew him best; his mother. It took a female doctor to undertake the only pathology ever done on Brendan to that stage. It did not take very long from that moment to arrive at the correct diagnosis as he was profoundly brain damaged and any potential intervention had long since passed.
It took Brendan 20 months to succumb to this horrible disorder and on the 17th of July 1999 he died.
During that period of time I learnt in the hardest possible way what was needed; what was actually given and the distance of that gap. No one was doing any research or trying to develop resources to assist those with any of the Leukodystrophies. From that time onwards I committed myself to addressing the issues in that gap, some of which include such important matters as medical, allied health and public awareness, correct diagnostic protocols for these difficult to identify disorders, nursing standards, palliative care protocols, holistic family support, education at schools and in the community, hospice, New Born Screening, knowledge of the Leukodystrophies, treatments, therapies, awareness of Government family entitlements and many more areas of urgency. As I could not raise any interest in Australia I found that I had to start up my own Leukodystrophy Not for Profits to create the vehicle to drive this necessary life time commitment.
To achieve this goal, I commenced travelling overseas and building working relationships as well as becoming the Australian representative on all the worlds Leukodystrophy consortia. The fire was lit when all the key ALD groups met in America and established the AAGA which recently merged with the newly reorganised World Leukodystrophy Alliance (WLA). Almost immediately ALDConnect was formed and the biogenetic company bluebirdbio increased their already heavily involvement with the announcement of the very exciting stem cells trial for ALD boys which would include Australia. The movement spread rapidly with the Global Leukodystrophy Initiative (GLIA) being the latest alliance to be formed. It is very enjoyable, productive and encouraging to have such great working relationships with them as well as all the Leukodystrophy advocacy groups around the world.
As many families can testify in Australia; they have been supplied with a steady stream of the very latest scientific and medical news as well as all the help they require in any area of need. I have been able to connect others to second opinions as well as to the accepted world experts in their required field of Leukodystrophy whether in Australia or overseas. The resource material on the websites is the most comprehensive that is available in this country and the content of the webinars and videos have been strongly influenced by myself and the other overseas experienced support and advocate groups. A great deal of this material has come from the dedication of ALDConnect and bluebirdbio. The webinars are delivered by medical and scientific professionals and our relationships with these fields is as good as it gets. The global agreement that those gap areas of concerns mentioned earlier on in this newsletter urgently needed addressing is confirmation of my action to start up the Australasian Leukodystrophy Foundation (ALF) and the Leukodystrophy Resource & Research Organisation Inc. (LRRO).
It gives me great pleasure and encouragement to see these enormous achievements and the progress that is continuing to be made. Some of those that stand out are; from bluebirdbio the Starbeam Study, the Red Flag Flyer and the ItMightBeALD mini website. ALDConnect has been responsible for the webinars resource material on ALD, educational videos and many excellent family/medical oriented conferences. Both of which have assisted in the enormously successful drive to get New Born Screening (NBS) into all the States of the USA. Holland now has ALD NBS with the UK getting closer, New Zealand is in the process as will Australia be when the new screening system protocols are eventually determined. The success of the NBS movement in the USA is really totally due to some feisty mums who run their own ALD support groups. The work of Elisa Seeger is truly outstanding as is Jean Kelley, Janis Sherwood, Gina Cousineau and so many others. The Kennedy Krieger Institute and GLIA held a very successful conference in May of this years and most of those talks were recorded and are available on my website for your viewing.
It is so pleasing to see how we have been able to transpose all of this to directly benefit our Australian families. None of this would have happened had the advocate groups of the world remained silent. I am so pleased to have formed the ALF and the LRRO which can only continue to be successful with your help through our recently introduced membership, donations, fundraising and a total commitment to saving our Leukodystrophy loved ones.
We need your help
We need you to become a member, join our team, get on our committee to have your say, raise funds for the future of our children and end their suffering by finding a cure for all the Leukodystrophies. Go to http://leukodystrophyresourceresearch.org/register/