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Today on Rare Disease Day, My Life, Our Future, a national program founded by leaders in the bleeding disorder community, including Bloodworks Northwest, the American Thrombosis and Hemostasis Network, the National Hemophilia Foundation and Bioverativ Inc., opened the largest research repository of its kind in the world to scientists. The My Life, Our Future Research Repository is a collection of genetic data and blood samples that are linked to phenotypic data from more than 5,000 people in the U.S. with hemophilia, a rare disorder that impairs the ability of one’s blood to clot. The My Life, Our Future Research Repository will allow researchers to advance the scientific understanding of the disorder, including genetic differences that affect bleeding severity and reaction to certain treatments. To view the multimedia release go to: https://www.multivu.com/players/English/8046151-national-hemophilia-foundation-my-life-our-future/

Sandy's Trauma and Beginning of Grief Every One of us go Through Grief OK, so I was on this journey – you can imagine. I loved the journey. And then, the next thing that happened was that tragedy in my life whereby my 3 daughters and their friend were murdered. I want to tell you about my journey of grief during this time. There may be some things there that can help. There are certainly some positive aspects that come out of it, so I’ll tell you about my journey of grief … and you know what? Every one of us here are going to have to go through grief. Learning Through Adversity Maybe many of us have already been through grief, and there’s going to be more. We’re all going to go through some adversity at some time. The key thing out of adversity and out of trauma is learning. What is there that you can learn from this event, because you know, those learning experiences are experiences for our soul and it’s the soul that needs the experience. I’m so Glad I Spoke to my Girls That Night So, Jenny and Kirsty, they were twins at 19 and Lexie, she was 16 – the next day. And the date was 23rd January 1987. They were living with their mum in the northern Sydney suburb of Pymble and a friend of theirs, Lisa was there as well, so there were 4 of them in the house. I was living about 5 kilometres away in Lindfield, married to Sandra and at that time we had a little 5 year old girl, Lara and a little 3 year old boy, Ian. At about 7 o’clock that Friday night I rang and spoke to Lexie and also spoke to Jenny and Kirsty and I tell you, the mirth and joy in that household was fantastic. They were all preparing to go camping for the Australia Day long weekend. And we taught them about camping, so I was really pleased about that. They were going to be joined by a group of friends to go camping. In retrospect I am so glad I was able to speak to the girls at that time, because at 10 past 9 that night Richard Madrell arrived at the door and professed his love for Jenny who of course had not had anything to do with him for 12 months and all of them wanted to keep him away with their mother even trying unsuccessful to take out an AVO on him. But he arrived at the door and shot her. He then shot Kirsty, then Lisa and then shot Lexie. All over in ten minutes. My First Reaction The police hammered on my door at about 2 o’clock in the morning and told me what had happened. My first reaction was that this was impossible … I mean I had only spoken to them several hours earlier. For me it was complete disbelief and I questioned about being shot with a shotgun as I knew something about guns from the army. I questioned the fact that it must have been impossible because with a shotgun you have to load it, fire and then re-load it, re-load it again …. Surely one or two of them are going to be able to get away. Surely not all 4 of them, not all 3 of my girls. I Still Couldn’t Believe it. On the way to their home in the police car I was still arguing with the police and I was asking if they had seen their bodies. “Oh, so you haven’t seen their bodies … you haven’t actually been there …. You’ve only been told about this over the radio … so you don’t really know this for sure.” Always thinking and hoping that it’s not true. My Denial Phase And then a little bit of doubt would come in and it would be like this: “God, how could you let this happen. No, no no, you haven’t let it happen. But …. If you have … what have the girls done? What have they done to deserve this for goodness sake? There is no God.” And so that’s where my denial phase started. By Sandy MacGregor – http://www.selfimprovementdeals.com See it on Video – 09 of 16 Sandy's Trauma and Beginning of Grief Next Video – 10 Hatred Anger and Revenge Can Become Habits During Grief