Announcement

Collapse
No announcement yet.

IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

    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.
    "They-Who-Were-Google are no longer alone. Now we are all Google."

  • #2
    Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

    Be the Match Foundation Privacy policy

    After talking to a couple of people it seems the best way to get a blood donation directly donated as replacement blood FOR MATT is to donate blood at a KAISER PERMANENTE donation location. They put his name, and a barcode, on the bag of blood then and there. I did a google search for "kaiser permanente blood donor center" and discovered specific locations in and around California. Just find your local one and give them a call. Remember to have Matt's full name, birthdate, and his hospital location (Kaiser, L.A.) as given out in the article.
    Last edited by eris; June 30, 2011, 20:52.
    "They-Who-Were-Google are no longer alone. Now we are all Google."

    Comment


    • #3
      Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

      (For anyone reading this, eris asked about issues with the rules in posting this, and the mods approved it. Requests for assistance, donations, and things like this run really close to spamming, so it is better to ask about these kind of things before causing problems.

      It is also a touchy-space with social consequences for people close to the person, the person in-need/at-risk, and more, and many things are weighed in coming to a decision on posting things like this.

      In short, just because you know someone that is in need of something does not mean this post is permission to get crazy with the cheese whiz, and pump your own swag, books, charities, or special interest... get permission. Any mod can give you permission to break the rules, but choose your mod wisely, because they talk with each other about decisions and mostly don't step on each others decisions. Thanks!)

      Thanks for taking the time to inquire about this, put this together and post it, Eris.

      I've only met Barkode a few times, and don't think I could claim to know him, so I do not plan to say much more than get well, and thanks for all your hard work, and the Ninja Parties. :-)
      Last edited by TheCotMan; June 30, 2011, 00:00.

      Comment


      • #4
        Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

        Thanks, Cotman, I knew I was forgetting an important bit of advice. Glad it was covered quickly.

        There has been one person who has had an issue when they attempted to direct a replacement donation specifically to the Kaiser in LA for Matt.

        "went to the San Jose (N first st) location. I called 1-800-redcross to schedule my appt with them. Once i got there they told me they didnt do that, so i talked to a supervisor at the SJ location who still argued with me that it wasn't possible, so I called the redcross again with her on speakerphone and they both told me the same thing. I was pretty upset, so I figured maybe I had just misunderstood how it worked and donated, accepting the card as the only thing they offered. "

        If you really want to make sure you can do a direct replacement donation I suggest you call and check. There has been donations gladly accepted as direct replacement from states other than California so it can be done. This may have been a single location aberration. If anyone can bring up any other similar situations please post. Perhaps a solution can be found.

        Remember to ask for a replacement donor donation. "A replacement donor donation is a hybrid of the two and is common in developing countries such as Ghana.[5] In this case, a friend or family member of the recipient donates blood to replace the stored blood used in a transfusion, ensuring a consistent supply."
        "They-Who-Were-Google are no longer alone. Now we are all Google."

        Comment


        • #5
          Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

          Originally posted by iqlusion
          I tried replying to the thread you made but being that I just signed up minutes ago I am in forced lurk mode and can't reply to threads. I wrote the author of the tubefilter article earlier today about my difficulty with Red Cross. I was ultimately denied for...PERSONAL INFO REDACTED...But before that point I tried explaining what you described in item 1 of the post, and it wasn't that I was specifically denied that option, but rather the people I was talking to had no clue what I was talking about. They referred me off to the local donor center which is only open 3 days a week so I wasn't able to get more information so far. Details of the donation attempt: It was in Southern California (Escondido, around 30 minutes from San Diego) and I went to a mobile blood bank. It could be that those folks are just less informed, but the people I talked to repeatedly cited southern california's lack of blood as a reason my donation would not go towards a specific individual.
          So, to sum up, both times I have heard of issues with the directed replacement donation has been in California. One in the San Diego area, one in the San Jose area. If you have type O negative they might be possessive and not want to do a direct replacement assignment? Some places don't know about it? It's too many variables at this point. If you can't, you can't. Give blood anyway. It's awesome that people are trying to be direct to Matt but it's simply awesome to give blood too.
          "They-Who-Were-Google are no longer alone. Now we are all Google."

          Comment


          • #6
            Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

            If you are having problems, request an allogeneic or homologous donation. It might be a problem with confusing terms as "directed donation" is very specifically to a certain person not to a bank for replacement. If they won't let you do that, it could be a location issue as some smaller Red Cross locations may not have the ability to connect to the centralized blood account system? If you find yourself needing his actual Kaiser number that can be resolved in PM. Some people have discovered they needed that and the problem was resolved.

            If you are determined to help Matt specifically try somewhere else. Save yourself some running around time and call ahead and ask to make sure.

            "Blood donations are divided into groups based on who will receive the collected blood.[2] An allogeneic (also called homologous) donation is when a donor gives blood for storage at a blood bank for transfusion to an unknown recipient. A replacement donor donation is a hybrid of the two and is common in developing countries such as Ghana.[5] In this case, a friend or family member of the recipient donates blood to replace the stored blood used in a transfusion, ensuring a consistent supply. Blood that is used to make medications can be made from allogeneic donations or from donations exclusively used for manufacturing.[7]"
            "They-Who-Were-Google are no longer alone. Now we are all Google."

            Comment


            • #7
              Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

              Originally posted by eris View Post
              So, to sum up, both times I have heard of issues with the directed replacement donation has been in California. One in the San Diego area, one in the San Jose area. If you have type O negative they might be possessive and not want to do a direct replacement assignment? Some places don't know about it? It's too many variables at this point. If you can't, you can't. Give blood anyway. It's awesome that people are trying to be direct to Matt but it's simply awesome to give blood too.
              Briefly, type O negative is the most desired blood (people who have this blood type are often referred to as a "universal donor" since everyone can take that blood), and if you have that blood type, it is very likely that they will not cooperate with your good intentions on directed replacement. This may be true even if you are at the same hospital where the person who you want to receive the blood is at.

              There is currently a critical need for Type O Negative (there's always a critical need, it seems), and I would suspect this is the problem. In addition, the July 4th weekend is coming up, and Red Cross (and other blood banks) try to conserve, or to increase their reply, due to the expected accident rates that accompany major holidays.

              Sympathies to Barkode and family.

              Comment


              • #8
                Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                Just some info regarding donations at the Red Cross....

                My family calls me a reverse vampire.. I used to give every time I became eligible. I haven't gone because of time, I am going to call and schedule today.

                If you are going to do the "Directed Replacement" type of donation you typically need to go to the central donation center in your city or region. *MOST* of the mobile/remote blood centers are staffed by volunteers. There might be 2-3 actual Red Cross staff on site and usually they aren't going to be processing you for donation.

                By going to your central donation center you will have a higher likely hood of getting someone that can help you. Usually the Red Cross staff are very kind and understanding and will bend over backwards to do what you need done. Be nice to them even if they don't understand what you would like to do.

                If you have trouble donating, but still want to help a couple of options...

                1) If you have trouble filling a bag in the time allotted for donations ask if you can fill a "short" or "small" bag. There is a minimum amount they require, however it is not a full bag and you can still donate.

                2) Be sure to drink a *LOT* of water, and eat something light before your donation. Heavy fatty foods raise your blood pressure.

                3) If you have a problem with iron in your blood take an iron supplement in the morning. This will make sure your iron count is high enough.

                4) ABOVE ALL ELSE!!! *BE HONEST IN YOUR PRESCREENING* Don't try and Social Engineer your way into the donation process. Answer their questions honestly, they test all the blood to screen it as well. The prescreening makes sure that you don't waste time and resources weeding something out that might harm others.
                "I think this box has already been owned.. it says PWNT"

                Comment


                • #9
                  Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                  I registered with the bone marrow folks at DefCon last year. Does that automatically get me into the pool for Matt, or should I register again somewhere else?

                  Comment


                  • #10
                    Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                    Originally posted by SmittyHalibut View Post
                    I registered with the bone marrow folks at DefCon last year. Does that automatically get me into the pool for Matt, or should I register again somewhere else?
                    Don't take my word as gospel here but I am pretty sure if you are in the registry it will automatically be searched for a match anytime that someone is in need of a donor. I think that's kind of the point of having such a registry. Again, that's just my guess.
                    perl -e 'print pack(c5, (41*2), sqrt(7056), (unpack(c,H)-2), oct(115), 10)'

                    Comment


                    • #11
                      Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                      Thank you Eris for the post, I think you covered all the important bases.

                      As was mentioned, this community often errs on the side of privacy. However since the TubeFilter article kind of blew the lid off that, it's good that it was posted here.

                      Barkode's Ninja Networks family is in touch with him and we're doing our best to keep his spirits up.

                      We will likely have more information soon about things the DefCon community can do to help, either before and/or during the con.

                      Comment


                      • #12
                        Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                        It seems people close to him are going to keep

                        http://barkodestatus.tumblr.com/

                        Up to date regarding his status.

                        This is hard info to talk about once, let alone multiple times. one central place for info makes it easier than repeating it lots of times to people

                        Comment


                        • #13
                          Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                          I talked to the special services director of United Blood Services Central Coast, the blood donations agency for San Luis Obispo county (as well as Ventura and Monterey counties). They don't do directed replacement donations, she cited cost of shipping the blood as the reason. They will still take normal volunteer donations and send a card out to someone to say blood was donated on their behalf, the blood goes into the normal donor pool (so to speak).
                          If you're in contact with Barkode, let him know the Halibut Stuff crew is wishing him the best and getting test kits ordered up from marrow.org.
                          Anch, thanks for the detailed info about donating.

                          Smitty, by registering last year you are "in the pool" in the sense that the registry is checked whenever someone needs marrow and if you match you are contacted.

                          Falconred, I wish I could do more but I'm half way around the world. Thanks for checking in and letting us know where to go for updated.

                          Tacitusl, thanks for that link.
                          "They-Who-Were-Google are no longer alone. Now we are all Google."

                          Comment


                          • #14
                            Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                            After talking to a couple of people it seems the best way to get a blood donation directly donated as replacement blood FOR MATT is to donate blood at a KAISER PERMANENTE donation location. They put his name, and a barcode, on the bag of blood then and there. I did a google search for "kaiser permanente blood donor center" and discovered specific locations in San Diego and LA. Better late then never information I guess.
                            "They-Who-Were-Google are no longer alone. Now we are all Google."

                            Comment


                            • #15
                              Re: IMPORTANT: ‘VGR’ Creator Matt Lewis Needs Our Help

                              FWIW, some information if you live in Northern California...

                              The Blood Centers of the Pacific (http://www.bloodcenters.org) handle the blood banking and special donations for the Bay Area. I called the local Kaiser Permanente facility who pointed me to them.

                              I'm in San Francisco and talked to Patricia of the Special Donation Department (800-215-6225). They're open M-F 8:30am-5pm. She stated that they can either handle general donations or "designated donations," which is blood to be used directly for the patient and requires a letter from the doctor and a matching blood type. They don't seem to support "replacement" or "credit donations" anymore. I don't know my blood type, but I'll find out when I do a general donation!

                              When calling a hospital to inquire about blood donations, try asking the general operator for the "Laboratory Blood Bank" That should get you to someone who at least knows about blood instead of having to deal with voicemail hell.

                              Joe
                              Last edited by Kingpin; July 1, 2011, 17:12. Reason: New information

                              Comment

                              Working...
                              X