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Be The Match Foundation - Bone Marrow Drive @ DC 18

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  • kive
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Good stuff... I just signed up online for a kit. Figured I'd let you know in case someone was measuring D*C's social impact or something.

    -kive

    Leave a comment:


  • marrowdog
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    DefCon is fast approaching and we wanted to share an amazing story with you.

    13-year-old Paizley, who was born with severe sickle cell anemia. She had to use a wheelchair, and just wished she could run, skate, dance and do stuff other kids her age did. Chemotherapy helped, but it wasn't a cure. Doctors told Paizley's family that she would need a marrow or cord blood transplant to live.

    African Americans and Blacks comprise only eight percent of the Be The Match Registry so her mother was worried that a donor would not be found in time.

    But a donor was found, someone willing to give this little girl a second chance at life. Today Paizley is wheelchair free and enjoys many things she couldn't do before, all with infectious energy and an ever-present smile.

    You can do the same for someone in need. Joining the Registry at DefCon!

    Visit www.bethematch.org for health guidelines.

    Leave a comment:


  • octalpus
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    The only reason I hadn't registered in the past was because of stories of the collection process involve minor surgery, a gigantic needle, and intense pain for days. I suppose I should have realised that modern medicine would improve the process! Count me in!

    Leave a comment:


  • theNURSE
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    I'm glad (and sorta proud) of DC for supporting this great group. If you do get called to donate realize you are helping to save somebody's life. Big Karma point there!
    Sorry some are disappointed the new procedure is painless but see me later if you want a large dose of painful pain.

    Leave a comment:


  • TrueDuality
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by Grendel View Post
    The Prez is correct - at the conference, you're simply giving a quick DNA sample through swabs on the inside of the cheek
    Can I start playing spot the fed now?

    But in all seriousness, this sounds great. I hadn't even heard of this registry before. I'll be more than happy to sign up at the con. Might need help finding the booth though, I tend to get distracted pretty easily by anything shiny.

    Leave a comment:


  • Grendel
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by marrowdog View Post
    Donor Privacy: The NMDP is required by law to maintain the confidentiality of everyone on the NMDP registry. computer and paer records containing your information are only accessible by authorized personnel. The NMDP will never share your information without your consent.
    Interesting tidbit - when I was in Ill. with the extreme makeover: home edition team, I got to meet the CEO of BTM, along with some really nice people that work for the organization. Found out that they didn't know who "the donor" was that was going to be on the show, nor did they have the means to reach me once they found out from the EMHE people; none of them could access my records, even though they worked there.

    Leave a comment:


  • marrowdog
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by YenTheFirst View Post
    Since it may be relevant to some people:

    What information does the registry need to keep on an individual to find a match, and what technical & legal protections are in place to protect this data?
    Donor Privacy: The NMDP is required by law to maintain the confidentiality of everyone on the NMDP registry. computer and paer records containing your information are only accessible by authorized personnel. The NMDP will never share your information without your consent.

    Leave a comment:


  • Nikita
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by YenTheFirst View Post
    You had teeth? Oh, what a luxury it would have been to have teeth!

    In my day, we had to fight of dinosaurs with nothing but our tongues, and maybe a bit of dirt if we were lucky.

    And donating a vial of blood? You had to suck on your own arm until the blood came to the surface, then spit it out into a rusty bucket! We didn't have any of these new-fangled "vials".
    Well played, well played.

    Leave a comment:


  • Grendel
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by YenTheFirst View Post
    You had teeth? Oh, what a luxury it would have been to have teeth!

    In my day, we had to fight of dinosaurs with nothing but our tongues, and maybe a bit of dirt if we were lucky.

    And donating a vial of blood? You had to suck on your own arm until the blood came to the surface, then spit it out into a rusty bucket! We didn't have any of these new-fangled "vials".
    You lucky, lucky bastard!

    Leave a comment:


  • YenTheFirst
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by Grendel View Post
    Today, you young kids don't know how easy it is to get on the registry, what with your cotton swabs. In my day, to get on the registry, I had to donate a vial of blood... and to get to the clinic I had to walk 60 miles. Through snow. Uphill. Both ways. And had to fight off dinosaurs. With my teeth (this is before I invented rocks and sticks).
    You had teeth? Oh, what a luxury it would have been to have teeth!

    In my day, we had to fight of dinosaurs with nothing but our tongues, and maybe a bit of dirt if we were lucky.

    And donating a vial of blood? You had to suck on your own arm until the blood came to the surface, then spit it out into a rusty bucket! We didn't have any of these new-fangled "vials".

    Leave a comment:


  • eris
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by theprez98 View Post
    You're misunderstanding. At the con they'll take a simple swab. Only if you are matched with someone will you need to go through the process; assuming that would be weeks/months/years later.
    Yep, I was absolutely misunderstanding. I apologize. I went back and re-read as well and realized I had jumped the shark on this one.

    Leave a comment:


  • Grendel
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by theprez98 View Post
    You're misunderstanding. At the con they'll take a simple swab. Only if you are matched with someone will you need to go through the process; assuming that would be weeks/months/years later.
    The Prez is correct - at the conference, you're simply giving a quick DNA sample through swabs on the inside of the cheek (from what I've seen, you're done within about 15 minutes total - longer if you sit and chat). It took 2 years before I got my first call (for a different woman that didn't make it) that did not result in marrow donation... and a total of 4 years before I actually got to donate marrow. I've met a lot of people that were on the registry but still haven't gotten the call.

    Today, you young kids don't know how easy it is to get on the registry, what with your cotton swabs. In my day, to get on the registry, I had to donate a vial of blood... and to get to the clinic I had to walk 60 miles. Through snow. Uphill. Both ways. And had to fight off dinosaurs. With my teeth (this is before I invented rocks and sticks).

    Leave a comment:


  • theprez98
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by eris View Post
    Whoa, your donation can take from four hours to six hours? That's almost an entire day of talks. Not that it isn't worth the time, but if people pay to attend a con to see the talks...I am unsure how many of them will be willing to give up what equates to almost a full day of paid for time. Will this be done in the evening? Or are appointments being set up for a different location/time outside of actual con?
    You're misunderstanding. At the con they'll take a simple swab. Only if you are matched with someone will you need to go through the process; assuming that would be weeks/months/years later.

    Leave a comment:


  • eris
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by marrowdog View Post
    Hi this is marrowdog. The PBSC donation uses similar technology as a plasma donation,i.e. aphaeresis, so you are absolutely right. However the actual donation is a bit longer than an hour. It can be any where from 4-6 hours because we can filter through the whole body.
    Whoa, your donation can take from four hours to six hours? That's almost an entire day of talks. Not that it isn't worth the time, but if people pay to attend a con to see the talks...I am unsure how many of them will be willing to give up what equates to almost a full day of paid for time. Will this be done in the evening? Or are appointments being set up for a different location/time outside of actual con?

    Leave a comment:


  • marrowdog
    replied
    Re: Be The Match Foundation - Bone Marrow Drive @ DC 18

    Originally posted by eris View Post
    Looks like the harvesting technique is a simple apheresis blood donation. Takes about an hour or so, they pull whole blood from one site on the body, it is spun to separate, the plasma is kept and the red blood cells are reintroduced back into the donor body via a second site. I used to do this all the time for the Red Cross. Easy. And regenerates faster in the host than a pint of red blood taken as during a whole blood donation.

    http://www.givelife2.org/donor/apheresis.asp
    Hi this is marrowdog. The PBSC donation uses similar technology as a plasma donation,i.e. aphaeresis, so you are absolutely right. However the actual donation is a bit longer than an hour. It can be any where from 4-6 hours because we can filter through the whole body.

    Leave a comment:

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