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IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help
Lots of people know Barkode. He is one of the masterminds behind the ever popular, invite only, Ninja Networks Party held every year at DefCon. He codes those fantastic badges we all covet so much each year. He’s one of only two “ginger” Goons. You know him, or have seen him, or have enjoyed his free booze, or played games on his free badges. You have been helped by him while he was on shift, wearing his bright red Goon shirt. He gave you a smile, a laugh, a wave. You know him, or you know of him.
What you don’t know is that he is sick. He needs your help now. He has been diagnosed with a very rare, acquired, blood deficiency disease and is may well be fighting for his life in the hospital where he lies in the acute care ward.
Paroxysmal nocturnal hemoglobinuria (PNH), sometimes referred to as Marchiafava-Micheli syndrome, is a rare, acquired, potentially life-threatening disease of the blood characterised by complement-induced intravascular hemolytic anemia (anemia due to destruction of red blood cells in the bloodstream), red urine (due to the appearance of hemoglobin in the urine) and thrombosis.
This happened very quickly. In a matter of a few weeks, he went from healthy to needing a bone marrow transplant to survive. This disease destroys his red blood cells. It is literally killing him from the inside. The only treatment for it is constant whole blood transfusions until a bone marrow match donor can be found and eventually a bone marrow transplant can be performed.
We as a community have, in the past, come together in amazing ways. It was a community of a few hundred people or less that created and attended the first DefCon. This year we will all attend the 19th year. It was local community members and volunteers that created the first “hackerspace” and now there are hackerspaces worldwide participating in global interactive contests and projects. We, as a community, are a powerful bunch when we care and try and do. And we, as a community, need to care now. Try now. DO NOW.
What you can do:
1. Find your local Red Cross location and give blood. Notify your nurse that you want your blood to be a directed donation, a replacement pint, for Matt Lewis at Kaiser Permanente Hospital in Los Angeles. You’ll need to mention his date of birth (11/4/1979). You are not donating your blood directly to him so it doesn’t matter what type you are. You are directing a replacement donation to the blood bank at the hospital. It’s a savings account deposit for the hospital so they can withdraw from checking for Matt (so to speak.)
**We have had a few reports that at some locations this option was denied to people. We have found that it is usually a location issue not an across the board policy. If they can’t do it, go somewhere else. Or you can ask them for an “I gave blood for you” postcard. You can mail it to Matt if you desire. Blood given at all is for a good cause, so don’t let it stop you if you can’t direct it. **
2. Consider becoming a member of a bone marrow match organization. DefCon attendees should be familiar with Be the Match Foundation as they were present in the contest room at DefCon 18 and will be returning to DefCon 19. Even if you are not a possible match for Matt Lewis, being a donor of bone marrow is a worthwhile action. Diseases that require bone marrow are frequently deadly and finding a match is often extremely difficult. It is easy to become a registered member. A kit will be sent to you, a cheek swab is taken, the kit is returned. No pain, all postage paid. Your personal information is private and confidential.
3. Check back here for further information and updates as they come in or to offer your comments and support.
Things you should NOT do:
1. Do NOT CALL THE HOSPITAL. It does not need an unintended telephonic DDOS attack and Matt can’t speak to you anyway.
2. Do NOT attempt to contact his family. They have enough to do right now. If you want to help, donate blood, register for bone marrow matching, send a postcard. If his family had any more to say or ask for it would be out there, people are helping.
3. Do NOT ask if you can send money. No one has asked for it, no one wants it at this time, again, if it becomes needed, someone will know and will spread the word.
4. DON’T BE A DOUCHE. This post has put out personal information about Matt that may or may not have been openly public knowledge before or has spread it further than it used it be. Many people wrestled with the ethics of releasing this information and decided the need outweighed the usual cautions. We rely upon you, as members of a supportive community, to not misuse any of it. Don’t disappoint us.
Thank you for reading this post. Thank you, in advance, for donating blood, or registering to donate bone marrow. Thank you for being the awesome bunch of people we know you can be.
Lots of people know Barkode. He is one of the masterminds behind the ever popular, invite only, Ninja Networks Party held every year at DefCon. He codes those fantastic badges we all covet so much each year. He’s one of only two “ginger” Goons. You know him, or have seen him, or have enjoyed his free booze, or played games on his free badges. You have been helped by him while he was on shift, wearing his bright red Goon shirt. He gave you a smile, a laugh, a wave. You know him, or you know of him.
What you don’t know is that he is sick. He needs your help now. He has been diagnosed with a very rare, acquired, blood deficiency disease and is may well be fighting for his life in the hospital where he lies in the acute care ward.
Paroxysmal nocturnal hemoglobinuria (PNH), sometimes referred to as Marchiafava-Micheli syndrome, is a rare, acquired, potentially life-threatening disease of the blood characterised by complement-induced intravascular hemolytic anemia (anemia due to destruction of red blood cells in the bloodstream), red urine (due to the appearance of hemoglobin in the urine) and thrombosis.
This happened very quickly. In a matter of a few weeks, he went from healthy to needing a bone marrow transplant to survive. This disease destroys his red blood cells. It is literally killing him from the inside. The only treatment for it is constant whole blood transfusions until a bone marrow match donor can be found and eventually a bone marrow transplant can be performed.
We as a community have, in the past, come together in amazing ways. It was a community of a few hundred people or less that created and attended the first DefCon. This year we will all attend the 19th year. It was local community members and volunteers that created the first “hackerspace” and now there are hackerspaces worldwide participating in global interactive contests and projects. We, as a community, are a powerful bunch when we care and try and do. And we, as a community, need to care now. Try now. DO NOW.
What you can do:
1. Find your local Red Cross location and give blood. Notify your nurse that you want your blood to be a directed donation, a replacement pint, for Matt Lewis at Kaiser Permanente Hospital in Los Angeles. You’ll need to mention his date of birth (11/4/1979). You are not donating your blood directly to him so it doesn’t matter what type you are. You are directing a replacement donation to the blood bank at the hospital. It’s a savings account deposit for the hospital so they can withdraw from checking for Matt (so to speak.)
**We have had a few reports that at some locations this option was denied to people. We have found that it is usually a location issue not an across the board policy. If they can’t do it, go somewhere else. Or you can ask them for an “I gave blood for you” postcard. You can mail it to Matt if you desire. Blood given at all is for a good cause, so don’t let it stop you if you can’t direct it. **
2. Consider becoming a member of a bone marrow match organization. DefCon attendees should be familiar with Be the Match Foundation as they were present in the contest room at DefCon 18 and will be returning to DefCon 19. Even if you are not a possible match for Matt Lewis, being a donor of bone marrow is a worthwhile action. Diseases that require bone marrow are frequently deadly and finding a match is often extremely difficult. It is easy to become a registered member. A kit will be sent to you, a cheek swab is taken, the kit is returned. No pain, all postage paid. Your personal information is private and confidential.
3. Check back here for further information and updates as they come in or to offer your comments and support.
Things you should NOT do:
1. Do NOT CALL THE HOSPITAL. It does not need an unintended telephonic DDOS attack and Matt can’t speak to you anyway.
2. Do NOT attempt to contact his family. They have enough to do right now. If you want to help, donate blood, register for bone marrow matching, send a postcard. If his family had any more to say or ask for it would be out there, people are helping.
3. Do NOT ask if you can send money. No one has asked for it, no one wants it at this time, again, if it becomes needed, someone will know and will spread the word.
4. DON’T BE A DOUCHE. This post has put out personal information about Matt that may or may not have been openly public knowledge before or has spread it further than it used it be. Many people wrestled with the ethics of releasing this information and decided the need outweighed the usual cautions. We rely upon you, as members of a supportive community, to not misuse any of it. Don’t disappoint us.
Thank you for reading this post. Thank you, in advance, for donating blood, or registering to donate bone marrow. Thank you for being the awesome bunch of people we know you can be.
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