The Official #BloodKode Challenge Thread ~:-)

[GeneErik]

Re: The Official #BloodKode Challenge Thread ~:-)

So I just thought I should add something. Through research of my own, I have found that not only are the directed (named, but non-prescribed) donations not done anywhere except kaiser, but even then, its only for Kaiser in LA and San Diego Counties, meaning that even if you find a kaiser, your donation will not go through the Kaiser system. My area uses Red Cross.

I'm thinking in order to spare the donation area (and my alcohol system) at Defcon, I will just make a donation normally through Red Cross, then the next time I'm in SoCal, I will make a directed donation.

Just thought I'd share...

[Jayson.Street]

Re: The Official #BloodKode Challenge Thread ~:-)

Barkode that is AWESOME news!! I am man enough to say I had my tear ducts on overtime while reading your tumblr post! ~:-)

I don't deserve nor desire any thanks or credit. I started calling out let's do something like several others did and then a lot of great people came together and made it happen! All props to the DEFCON crew & Geo.

Hope you are at DEFCON but if not you will be there in spirit (plus a few signs of you). ~;-)

I also registered for Be the Match last year and I'm hoping we get thousands to do so this year!

Also if getting a Mohawk helps people think about it and gets them to donate well then shave away!

Stay well my friend see you at the Ninja party next year! ~:-)

[Whiteb0rd]

Re: The Official #BloodKode Challenge Thread ~:-)

barkode:

It's good to hear from you, that you're through the immediate crisis, etc.

As to the thanks, at least from my POV: thanks for the ACK, but that's just what friends and a community do.



Will we be seeing you in LV?





WB

[barkode]

Re: The Official #BloodKode Challenge Thread ~:-)

Well guys, holy shit.

Seriously, this has been a hell of a situation. The community support has been staggering, and it's helped more than any of you could possibly understand. Reading through these threads... I mean, what do you even say.

My tremendous thanks (and the whole story) are posted in a rather long, personal blog entry over at http://matthewmlewis.tumblr.com/

An extra thanks to Jayson and Eris for taking such a charge in this, and everyone who has sat down and given blood either to the Red Cross or any other organization, Kaiser or otherwise.

Couple of notes:

1. The directed donations are amazing, but I'd hate for anyone to hesitate giving blood due to logistics concerns about directing a donation towards me. At the end of the day, it really doesn't matter whether you give blood freely to the Red Cross or in a directed donation at Kaiser. Whether you give to me or someone else, you're giving, and giving is what counts. I used to be a Red Cross donor myself even as a Kaiser member.

Giving blood at all is just an incredibly selfless thing to do, and I'm inspired by how many people actually went through with it. Kudos to you. Every pint can and very likely will save someone's life. It's a serious impact.

My immediate need for rapid transfusions is over (after nine transfusions). I don't know when my next will be. However - there is a tremendous need for blood donations in this country, and I hope that the motivation to give blood doesn't stop now. I would encourage anyone capable to consider donating blood to your local blood bank.

2. There is a treatment (not a cure) for PNH, a specialized medicine called Soliris - the world's most expensive drug according to Forbes. The treatment is a special type of immunosuppressant, and delays the need for a bone marrow transplant. I'm currently on the treatment and it looks promising. If it works very well, it will also reduce the amount of blood transfusions I need on an ongoing basis. Ideally, if Soliris is effective in me, it will delay the bone marrow transplant for years.

See the blog post I mentioned earlier for more details on that.

3. The Bone Marrow Registry (Be The Match guys) - this is an amazing organization. I wish everyone in the world was signed up for it. I signed up last year at DEFCON. (I can no longer be a donor.)

Donating or receiving bone marrow is a life-altering experience. It is stupidly easy to sign up (it's a cheek swab), and the rumors about painful processes for donors are greatly exaggerated.

For what it's worth - I just had a bone marrow biopsy (this it the painful thing everyone talks about.) It sucks horribly - but it is NOT what you go through as a DONOR. Donors often just have to take some meds for a few days, jack into an IV for about four hours, then they go home. End of story.

If you're a healthy person, there's no reason you should leave DEFCON without taking five minutes to sign up for Be The Match.


In short - this has been a complex experience. Expressing the gratitude I feel towards the community is going to take a larger effort than a brief forum post. In the meantime, my heartfelt thanks goes out to you all.

[astcell]

Re: The Official #BloodKode Challenge Thread ~:-)

If you are not living in America they will have questions about your travel and inoculations. Some country's citizens are bared from donating. Best to check with the screening folks.

And do NOT drink coffee or other caffeine before donating, they hate that.

[BigC]

Re: The Official #BloodKode Challenge Thread ~:-)

Is there any issue for non-Americans who want to donate blood while there or get checked for a match?

[geo]

Re: The Official #BloodKode Challenge Thread ~:-)

Looks like the fine folk at bumpkey.com are getting tested for Marrow Matches. (Great for Matt!) *And* they've offered to donate some prizes for those entering their donations in the #bloodkode challenge. (Good for y'all!)

So please remember to bring the proof of your donation with you to DefCon to enter to win some cool stuff. I'm sure the list of prizes will keep growing as we get closer to the event.

And if you haven't been tested yet for marrow matches, "Be the Match" will be at DefCon where you can sign up.

If you have signed up THANK YOU.

And don't forget to pester your friends!

[geo]

Re: The Official #BloodKode Challenge Thread ~:-)

Just a quick update on prizes, for those playing along at home--

No Starch Press has graciously offered some signed books from DefCon speakers (contingent on things like the speaker not getting jailed prior to DefCon for telling the TSA exactly where they could start their gate-rape), including:

Metasploit - The Penetration Tester's Guide
http://nostarch.com/metasploit.htm

IDA Pro Book
http://nostarch.com/idapro2.htm

Gray Hat Python
http://nostarch.com/ghpython.htm

Hacking: The Art of Exploitation
http://nostarch.com/hacking2.htm

Thanks a bunch Bill!




And as a reminder, please donate ahead of time and please see if you are a marrow match.

Oh, and please tell your friends about this and encourage them to do the same. The purpose of #BloodKode is to get the word out there (short term purpose -- long term is to find a marrow match for Matt) so the more people that hear about this -> the more donors/potential matches.

THANK YOU!!

[priest]

Re: The Official #BloodKode Challenge Thread ~:-)

Just one of the many reasons why you are AWESOME!
thank you so much for your support! ~:-)

Cheers mate. As of 1230 hrs pdt today there is a pint of Priest blood with an extra helping of virgin blood and double helping of N00B on top waiting for Barkode at Kaiser LA. I am O- so I am a universal donor. And we a clear for a behind the scenes tour of DC as well. Photo to follow since this is coming via smartphone.

[Jayson.Street]

Re: The Official #BloodKode Challenge Thread ~:-)

To Nikita, Charel, Neil, Priest & of course DT

THANK YOU!

This wouldn't have even happen if it was not for the quick response, great support and just plain awesomeness you have showed during the struggle of trying to make this happen.

I am sorry I couldn't get the info updated in time for the program but thanks to Geo & Neil there will be awesome signage in place to inform everybody at DEFCON what is going on.

I also hope they are checking out the forums too so they can read these updates ~;-)

The most important info that needs to be conveyed.

1. Blood is temporary Matt HAS to have a bone marrow transplant to be CURED!
So make sure everyone registers to the Be the match foundation booth at DEFCON or they can send a kit to their home more info here. https://forum.defcon.org/forumdisplay.php?f=558

2. Make sure the blood gets to Matt by donating at a Kaiser facility or a donation center that allows directed donations! We have made sure the Blood Institute has been informed of who we are donating for. Still I consider the blood drive at DEFCON more of a visible show of support for Matt & a great way to get the word out.

3. When DEFCON is over Matt WILL STILL NEED HELP. Please remember that you can donate blood every 6 weeks! He will not better better till he finds his match and gets a bone marrow transplant. This is not a cause to be taken up before DEFCON then forgotten after the hangover goes away ~;-)

4. I will do my part to make sure there are updates after DEFCON & will even probably keep the photo contest going with me personally sending out the prizes.

5. I know NO ONE is doing this for a prize except for the GRAND PRIZE! (still it helps keep it interesting and keeps people creative I want to see some photos!)

I have not even finished 1 can of Pepsi Max so I apologize in advance for typpos grammar and, punctuation mistakes that are in this post.

[eris]

Re: The Official #BloodKode Challenge Thread ~:-)

THIS is what we put in the program, based off this thread and email thread I got from Jayson.


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.

Ooops. When I first wrote about him being a Goon it was based on second hand info. Turns out he's never been a Goon. I corrected that in the first few posts of this thread. Guess it didn't make it into your final edit.

[eris]

Re: The Official #BloodKode Challenge Thread ~:-)

We are NOT using Red Cross they have no interest in doing blood drives in Las Vegas (their words not mine)

We have set this up with the Blood Institute and they have been informed that it is a drive FOR BarKode I myself am unsure how that is going to work but I have stressed that point in calls with the manager of the Blood Institute in Las Vegas. Still that is why I have been stressing to donate BEFORE DEFCON if possible
1. That way you can make sure the blood goes where it should
2. No worries about getting drunk ~;-)

.

Oh thank god. That was the first time I heard it WASN'T Red Cross and actually makes me feel SO MUCH BETTER. When I first started this thread the number of times I heard in PM or texts that people were giving blood and were being turned down by Red Cross for "direct" just made me ill. I tried to update the info to include that it HAD TO BE at a Kaiser blood bank as quickly as I could but I hadn't seen any word about that regarding #Bloodkode.

On a side note, HOW AWESOME ARE THESE KIDS???!! So awesome, they made a video on honor of Matt Lewis to educate people about the disease and the Be The Match foundation. CLICK HERE.

[Nikita]

Re: The Official #BloodKode Challenge Thread ~:-)

THIS is what we put in the program, based off this thread and email thread I got from Jayson. It sucks that it's incorrect, but it will get the ball rolling. A sign is all that is needed to display the hours of the blood drive.

Q: What can you get a hacker that has it all?!?
A: How about some blood & bone marrow!


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.

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. Enter the #BloodKode Challenge! (See contest page for more info.) Donate Blood onsite at DEF CON! There will be a blood drive held Friday and Saturday From 10:00 to 19:00 in the main lobby next to registration. There will be signs marking it's location. If they get 300 people to donate for Barkode then Jayson E Street and Geo have agreed to get Mohawks, Saturday at 18:00 at the MohawkCon booth.

Bonus: Donate blood on site and MohawkCon will give you a complimentary Mohawk for free! See their booth for more info.

2. 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.

3. 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.Go visit them in the contest area, a cheek swab is taken, No pain, Your personal information is private and confidential. You can also request a kit be mailed to you and you can do it at home, all postage paid. But the sooner you register the better.

Keep updated at: http://barkodestatus.tumblr.com/ for more ways you can help.


#BloodKode Challenge!
There will be two types of entries into the challenge:

BASIC --- Raffle with normal prizes.
You need to attend the blood drive and donate for BarKode. You will need to bring your proof to a booth at DefCon to sign up, which will then make you eligible to win one of the "normal" prizes. No worries if you have already done so before the challenge, or before the con,just bring in the proof! Please note though we don't want BarKode to get alcohol poisoning so be careful about what you drink before & AFTER donating! ~;-)

EXTREME --- Raffle with AWESOME prizes.
You will need to get your picture taken in the most creative way possible, preferably with a picture or cut out of Barkode with you WHILE you are giving blood & provide proof that it went to Barkode. People who do that will be in the running for the 1st tier prizes (Chris Summer has donated a DEFCON skate board that we will get the DEFCON speakers, goons etc. to sign.) Plus other cool goodies! Please submit your photos on the forums at: https://forum.defcon.org/showthread.php?t=12351

GRAND PRIZE -- There is only 1.
A healthy BarKode! No one should forget that it's not about the prizes: It's about helping out one of our own!


Twitter: #BloodKode

[Jayson.Street]

Re: The Official #BloodKode Challenge Thread ~:-)

Cheers. I will clear it at the top to be sure its kosher. Alternately I could also do an override on a talk or two and make sure the person is at the head of the line.

Just one of the many reasons why you are AWESOME!
thank you so much for your support! ~:-)

[Jayson.Street]

Re: The Official #BloodKode Challenge Thread ~:-)

Red Cross is, unfortunately, not actually the best way to get blood directly to Barkode or directly to replace blood used from a Kaiser blood bank for Barkode. I hope that part is already worked out with Red Cross for the DefCon blood drive. Otherwise, it will make quite a few people pretty unhappy. Just giving blood is great but if it's set up as FOR BARKODE and it doesn't get to him in some fashion it will be disappointing to say the least. Jayson, have to set that up with the van ahead of time?

We are NOT using Red Cross they have no interest in doing blood drives in Las Vegas (their words not mine)

We have set this up with the Blood Institute and they have been informed that it is a drive FOR BarKode I myself am unsure how that is going to work but I have stressed that point in calls with the manager of the Blood Institute in Las Vegas. Still that is why I have been stressing to donate BEFORE DEFCON if possible
1. That way you can make sure the blood goes where it should
2. No worries about getting drunk ~;-)

This was done so quickly and at the last moment I am basically running blindly to a goal hoping it works out. Not the most inspired answer but honest. If this event is a success it will not be because of me but because of all the hard work put into it by the DEFCON crew & Geo.