My family and I have been on a mission to spread the word far and wide to encourage anyone and everyone to consider joining the Be The Match registry for allogeneic stem cell transplant donors. This will help not only some people in the myeloma community, but many other people with blood disorders or cancers. It will also generally raise awareness about multiple myeloma.
Our efforts have resulted in a written piece that will go up on NBC's Today.com website! My Mom was interviewed yesterday, and I was interviewed today. We talked for an hour and a half. The writer also wants to talk to my doctors at Dana Farber. This is very exciting!
I told her the Myeloma Beacon was a great resource for patients and their families! There is already a connection between NBC and Myeloma Beacon through Tom Brokaw, and I pointed out in my interview that Myeloma Beacon was visible in Mr. Brokaw's Dateline story.
More publicity = more awareness = more interest = more money & research = better treatments for us!
Forums
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Raising multiple myeloma awareness
Thanks for the update, Tracy, and for mentioning The Beacon to the folks at Today.com.
For those interested in more information about Tracy and her search for an allo transplant donor, Beacon forum regular Mark11 recently started a thread with a link to an article on the topic:
"Forum contributor needs help finding stem cell donor" (started March 26, 2015)
Good luck Tracy!
For those interested in more information about Tracy and her search for an allo transplant donor, Beacon forum regular Mark11 recently started a thread with a link to an article on the topic:
"Forum contributor needs help finding stem cell donor" (started March 26, 2015)
Good luck Tracy!
Re: Raising multiple myeloma awareness
Hi Tracy J.,
That is great that your story will be featured. It is good that others can see a younger patient with the disease as well as a more typical patient like Mr. Brokaw. I think Mr. Brokaw did an excellent job on the hour special presenting the disease. Younger patients like us have a unique journey/perspective.
Thanks again for all the work your family is doing for the Be The Match Registry. My donor tells me donating was a life changing experience for her as well.
Mark
That is great that your story will be featured. It is good that others can see a younger patient with the disease as well as a more typical patient like Mr. Brokaw. I think Mr. Brokaw did an excellent job on the hour special presenting the disease. Younger patients like us have a unique journey/perspective.
Thanks again for all the work your family is doing for the Be The Match Registry. My donor tells me donating was a life changing experience for her as well.
Mark
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Mark11
Re: Raising multiple myeloma awareness
The story is up! Here is a link:
http://www.today.com/health/mixed-race-matchless-woman-rare-cancer-seeks-donor-t27461
It is generating a lot of awareness about both myeloma and the need for stem cell donors.
It is intended for a general audience of about a 6th grade reading level, so there isn't much on the more complicated aspects of myeloma medicine, but I thought the author did a good job!
http://www.today.com/health/mixed-race-matchless-woman-rare-cancer-seeks-donor-t27461
It is generating a lot of awareness about both myeloma and the need for stem cell donors.
It is intended for a general audience of about a 6th grade reading level, so there isn't much on the more complicated aspects of myeloma medicine, but I thought the author did a good job!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Raising multiple myeloma awareness
This is a really good story, Tracy, and I am glad that you consented to do an interview and tell your story. I see that Tom Brokaw's story is also linked in, and 'Be the Match' system too, which is an international system of finding donors.
Finding a match for an 'allo' transplant could be very difficult, given the incredible diversity of the genetics of all people. I hope that you have found a match also, or will soon.
Finding a match for an 'allo' transplant could be very difficult, given the incredible diversity of the genetics of all people. I hope that you have found a match also, or will soon.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Raising multiple myeloma awareness
This is awesome!
Thanks Tracy J, for all your early help when I was asking some basic questions about coping with my Induction Therapy.
I recall you were waiting for a matching donor for the Allo Transplant a few months ago and how frustrating your Myeloma experience had been to that point, even after an ASCT. It is wonderful that you have turned your painful experience into something so positive and helpful for others, a great example of staying positive and constructive, for all of us.
K_Shash
Thanks Tracy J, for all your early help when I was asking some basic questions about coping with my Induction Therapy.
I recall you were waiting for a matching donor for the Allo Transplant a few months ago and how frustrating your Myeloma experience had been to that point, even after an ASCT. It is wonderful that you have turned your painful experience into something so positive and helpful for others, a great example of staying positive and constructive, for all of us.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Raising multiple myeloma awareness
Tracy, I have followed your story because you are looking for a match. My son is a half match for my daughter. There are places, Jefferson in philly, John Hopkins in Baltimore & others that do half match Allo transplants. Could you consider that? Good luck
Re: Raising multiple myeloma awareness
That's quite a story Tracy. Nicely done.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Raising multiple myeloma awareness
Wow - that's a great story, Traci! You just shine in it, and that's way more relevant than the more technical myeloma issues.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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