At the end of last year I was contacted by a representative from
Be The Match (The National Marrow Donor Program) who informed me that they had noticed the volunteer advocacy work I had been doing online to
help my cousin Tami and
other patients who needed to find marrow matches to save their lives.
They had noticed there were many people like myself, out there doing their own thing to raise public awareness about Be The Match. So they wanted to create a program that would offer us up to date information as well as an actual liaison at Be The Match who could assist us in our online advocacy efforts. Great! I need all of the help I can get.
I was asked to a part of a focus group that would help to develop information for the program over the course of several weeks. I joined the group, answered lots of questions, then they took that information and developed the "Social Media Action Response Team" program and I'm very excited to say that I am now an official "SMART" Volunteer for Be The Match.
The journey I have taken into being a volunteer advocate over the past year has been more heartbreaking then joyful but ultimately even through the sadness it is rewarding because even though many of the patients I wish had found matches in time didn't, it doesn't mean that the effort to help them was wasted. In fact the patients themselves are usually the first to point out that even if a match isn't found for them, they know that people who joined the donor program to try to help them, might someday help another patient in need, and that means the world to them.
Yesterday was a bittersweet day.
Rob Harder is a young man who was entering the prime of his life in 2009 having just graduated from college. Early last year he was diagnosed with an Aggressive T-Cell Lymphoma. He set up a blog, a Facebook Group (which is how I met him) and shared his story with the world. Yesterday his family posted on his Facebook Group that he is nearing the end of his battle and on his behalf, bid his friends and fans farewell. (ETA: Rob did pass away that same evening. May he RIP)
At almost the same moment that Rob's family posted that he was not in pain and surrounded by his loved ones, who want to be there to comfort and love on him as he passes, little 8 year old
Natalie Nakatani's family posted on Facebook that she had finally received her bone marrow transplant yesterday and now has a chance at surviving the Acute Myeloid Leukemia she suffers from. You might recall from a previous post that her doctors had given her less than 6 weeks to find a match before they felt it would be too late, when, with I think less than 2 weeks left, an international donor match was found for her in China.
What has become normal for me is simply fielding some questions to the proper places that can help those in need. For instances a few weeks ago I received a desperate plea for help from a man in Europe who was told there was no hope for a transplant for his condition because the cost was too prohibitive and another inquiry from someone here in the U.S. who wanted to set up a donor drive for their sick cousin. I was able to direct both of them to the proper agencies who could help them. The man in Europe I found a group that might be able to get him into a clinial trial offering some hope and more time with his family. The woman in the U.S. I was able to direct to both Be The Match and DKMS to help her set up a donor drive.
So emotionally it is often hard on a good day and absolutely heartbreaking on a bad day. But I believe if more people get involved and if more people are willing to donate their stem cells or marrow to a stranger in need, we can turn this whole thing around and begin saving more patients instead of watching them wait and wait for a marrow match that never comes or is found too late. The donation process has become very straightforward using a newer method 75% of the time called Peripheral Blood Stem Cell donation (PBSC) where the stem cells can be harvested through your blood instead of marrow being extracted from the hip bone.
CLICK HERE to learn more about the 2 donation methods.Each of us can make a difference. We can be willing to donate our marrow or stem cells to a patient in need and/or help encourage others to join the marrow registry. Please contact me if you have any questions at all. I'm happy to help find you some answers.
Visit Be The Match's new YouTube channel at www.youtube.com/bethematch. There you will find videos about patients, donors, the donation process, and more.
Do you watch the Bravo tv show "9 By Design?"
I'm sharing this with you because part of the next episode will feature a fundraiser that was held for little Jasmina Amena. The hosts of the show, Robert and Cortney Novogratz, were personal friends of Jasmina before she passed away and are still friends with Jasmina's mom Thea. Because of what happened to Jasmina, Robert and Courtney were able to create a feature on their program to help spread Jasmina and Thea's message: To raise awareness about Leukemia and the need for more people to join the registry as willing donors.
Rob Harder is a young man who was entering the prime of his life in 2009 having just graduated from college. Early last year he was diagnosed with an Aggressive T-Cell Lymphoma. He set up a blog, a Facebook Group (which is how I met him) and shared his story with the world. Yesterday his family posted on his Facebook Group that he is nearing the end of his battle and on his behalf, bid his friends and fans farewell. (ETA: Rob did pass away that same evening. May he RIP)
At almost the same moment that Rob's family posted that he was not in pain and surrounded by his loved ones, who want to be there to comfort and love on him as he passes, little 8 year old Natalie Nakatani's family posted on Facebook that she had finally received her bone marrow transplant yesterday and now has a chance at surviving the Acute Myeloid Leukemia she suffers from. You might recall from a previous post that her doctors had given her less than 6 weeks to find a match before they felt it would be too late, when, with I think less than 2 weeks left, an international donor match was found for her in China.
So emotionally it is often hard on a good day and absolutely heartbreaking on a bad day. But I believe if more people get involved and if more people are willing to donate their stem cells or marrow to a stranger in need, we can turn this whole thing around and begin saving more patients instead of watching them wait and wait for a marrow match that never comes or is found too late. The donation process has become very straightforward using a newer method 75% of the time called Peripheral Blood Stem Cell donation (PBSC) where the stem cells can be harvested through your blood instead of marrow being extracted from the hip bone. CLICK HERE to learn more about the 2 donation methods.
Read about Taylor on the Mid Dekalb news website by CLICKING HERE
I'm begging here. If you are of African descent (No matter what continent you live on) and if you are not in a National Marrow Donor Program PLEASE consider joining to help save Zyreal. Also please forward this message to anyone you know who might be able to help him.
(These links will open in new browser windows and may take up to 1 minute to load as they are high resolution, printable flyers.)
And this is Janet. You can visit her WEBSITE by CLICKING HERE. There you can learn more about her, how to join the National Marrow Donor Program and leukemia. For current updates visit her BLOG by CLICKING HERE.
On August 24, 2009, 22 year old Janet Liang was diagnosed with acute lymphoblastic leukemia, a form of blood cancer. Janet is currently living in the Bay Area and is undergoing chemotherapy in the hopes that she can attain a successful remission. If the chemo fails she will need a stem cell transplant. She will then be faced with the daunting task of locating a marrow match from the national or international registries after tests revealed that her only sibling is not a match. Processing new donor samples can take up to 2 months or more so it is crucial for people to be tested asap before her need becomes critical.
Already in the registry? No matter how long ago you signed up you will remain in the National Registry until you turn 61 years old. If you move or change your phone number you can update your contact information by CLICKING HERE. 
