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  #1  
Old Fri Apr 16, 2010, 03:37 AM
Marrowforums Marrowforums is offline
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Austin Hope, Steps & A Cure Walk, April 2010

The Austin Hope, Steps & A Cure Walk, a fundraising and awareness event to benefit the AA&MDSIF, will be held on Sunday, April 18, 2010.

The Walk will cover a 2 mile loop in scenic Riverside Park. There will be refreshments, music, an auction, and an opportunity to connect with other patients and their families and friends.

Where:
RunTex (Google map)
422 West Riverside Drive
Austin, TX 78704
When:
Sunday, April 18, 2010, starting at 2:00pm
More information:
See the event description for details, including parking and contact information.
Registration:
Registration will be on-site.
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  #2  
Old Fri Apr 16, 2010, 05:42 AM
Robi1Knobi Robi1Knobi is offline
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Location: Austin, Texas USA
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I will be there!

I hope to meet some others like me (but sad there are others like me)....I have moderate AA now, and would love to know who also lives here and has this disease?
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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Old Fri Apr 16, 2010, 04:44 PM
MichelleD MichelleD is offline
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Location: McKinney, TX
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Hi Linda,

I'm also 41 and live just north of Dallas. I've had AA for 6+ years now. Found out last year that it has gone into MDS and PNH. I can't make the walk because my kids both have lacrosse games that weekend. I will be at the MDS/AA mini day at MD Anderson at the end of May that the Foundation is doing.

Michelle
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Michelle, 41, SAA, treated with ATG Dec 2003 & May 2006. dx PHN & MDS, May 2009.
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Old Wed Apr 21, 2010, 09:19 AM
Robi1Knobi Robi1Knobi is offline
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Hi Michelle, did you progress from mild, or did you go to the hospital with severe? I wonder how long it will take me to go to severe, since I went from mild to moderate in 2 years. I know everyone is different, but just curious about you. Sorry you couldn't make the walk, I was proud to be able to walk it and support all of us. I can't go to the May lecture, I have to work (. Dr. Scheinberg is one of my docs with Dr. Neal Young, I just went to NIH in March. Do you go there too? I have been going since getting diagnosed in 2007, in Dallas by a transplant doc. The Dallas doc said I had moderate-severe at the time, but when I went to the NIH for a second opinion, they told me it was mild..
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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Old Fri Apr 23, 2010, 11:24 PM
MichelleD MichelleD is offline
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Linda,
I got diagnosed in the hospital with SAA. My hemoglobin was under 7, platelets 10,000 and whites around 500. We didn't know I was sick and lost so much blood in 36 hrs due to my monthly cycle. I responded great to the ATG the first time. But I went out of remission about 6 months after they took me off the cyclosporin. The second go around took about 16 months to fully respond but it worked. Then last May we learned it had gone into the PNH and MDS. I do have a file at the NIH that they are keeping on me. They just don't want me to come out for a visit until my counts take that downward turn again. I have another BMB this week at UT Southwestern to see how I stand. I'm hoping that my blast hasn't grown and no new chromosome mutations. We'll see.

Michelle
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Michelle, 41, SAA, treated with ATG Dec 2003 & May 2006. dx PHN & MDS, May 2009.
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Old Mon Jun 7, 2010, 02:11 AM
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A total of more than $27,000 was raised by Hope, Steps & A Cure Austin. Walk sponsors and teams are listed here.

Congratulations to all who participated!
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