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  #1  
Old Tue Oct 9, 2012, 05:08 PM
edithr edithr is offline
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My bone marrow registry drive

After putting many many hours into hosting a bone marrow drive, I got a grand total of... drum roll please... 45. Not nearly as many as I had hoped, I feel kinda depressed. I did raise $900 though, I suppose that helps.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #2  
Old Tue Oct 9, 2012, 08:13 PM
Neil Cuadra Neil Cuadra is offline
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Edith,

You should be congratulated and you should feel proud. You might have saved 45 lives.

When our Hope, Steps & A Cure committee organized a huge event in Los Angeles in 2011, with hundreds of attendees and hundreds of volunteers, our bone marrow drive got a total of 39 sign-ups (see the details here) and we were pleased. So getting 45 registrations at a one-woman drive is huge, and the fundraising was great work too!
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  #3  
Old Tue Oct 9, 2012, 08:34 PM
ssdavi71416 ssdavi71416 is offline
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Wow! I think that is very impressive. Thank you for the incredible effort.
Scott SAA 3/2012
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  #4  
Old Thu Oct 11, 2012, 02:34 AM
MDSPerth MDSPerth is offline
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Thanks

What a great effort Edith - your work is really to be commended. I am keeping my fingers crossed that one of those 45 is a match for Paul.
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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  #5  
Old Thu Oct 11, 2012, 05:58 AM
SLB SLB is offline
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As someone waiting for a "perfect match" to come my way, I think that is a great effort! If even one person is saved then all your efforts are worth it! Well done!!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #6  
Old Thu Oct 11, 2012, 08:49 AM
triumphe64 triumphe64 is offline
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Edith,
You did great. Those people will tell their friends, and the word will spread.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #7  
Old Thu Oct 11, 2012, 06:01 PM
edithr edithr is offline
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Thanks for making me feel better. Neil, you raised an incredible amount of money! Now thats awesome! The post says it's an annual fundraiser, how did you do in 2012? Will you have one in 2013?

MDSPerth and SLB - I too hope for a match for you. I asked about finding out if someone from the drive was ultimately a match, and she (the person from Be the Match) said it's possible but takes a lot of hours for her to gather the data and she just doesn't have the time to do that for each drive she has.

Raising awareness was something I hadn't considered, but you're right - somewhere someone will hopefully remember this.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #8  
Old Thu Oct 11, 2012, 09:05 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by edithr View Post
Thanks for making me feel better. Neil, you raised an incredible amount of money! Now thats awesome! The post says it's an annual fundraiser, how did you do in 2012? Will you have one in 2013?
We plan to have Hope, Steps & A Cure Los Angeles every year, and there are similar drives in other cities too.
  • In 2010, our inaugural event, we had over 150 attendees and raised over $15,000.

  • As you saw in 2011, we had about 300 attendees, raised $44,800 and had a bone marrow drive with 39 signups.

  • In 2012 we added a 5K run to our traditional walk, had about 350 walkers and 100 runners, and raised over $80,000. I don't know how the bone marrow drive did this year.

  • In 2013 we hope to have 7 billion attendees (everyone on the planet), raise an infinite amount of money, and sign up everyone in the country who is eligible for the national bone marrow registry and isn't already registered. You have to set high goals!
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  #9  
Old Fri Oct 12, 2012, 06:49 AM
edithr edithr is offline
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When will you know the 2013 dates and locations? I think I'd like to be a part of it. My coworkers are getting a team together to do a Warrior Dash, http://www.warriordash.com/, but this walk sounds more like my speed.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #10  
Old Fri Oct 12, 2012, 08:47 AM
triumphe64 triumphe64 is offline
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Edith,
There will also be one in San Antonio. It won't be as crowded.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #11  
Old Fri Oct 12, 2012, 12:12 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by edithr View Post
When will you know the 2013 dates and locations? I think I'd like to be a part of it. My coworkers are getting a team together to do a Warrior Dash, http://www.warriordash.com/, but this walk sounds more like my speed.
The AA&MDS provides the focus of publicity for these walks, so watch their page or sign up for their mailing list to keep up with event news.
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